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Caregiver Crisis Planning Worksheet
Ideally, before the next crisis, you should read this worksheet from the front to the back. Then you should fill in your personal information and strategies for handling the next caregiver crisis. If you are in a crisis right now, you should go to the last few pages immediately and read the rest later, but as soon as possible.
This worksheet is divided into three sections:
1. An overview of things that go wrong in how we cope during a crisis.
2. An overview of how we can improve how we cope and prepare for a crisis.
3. A worksheet to plan how you are going to handle the next crisis.
Evaluating your crisis management style
Everyone who has been in a crisis has looked back and said, “I wish I had said or done something differently.” This is an opportunity for you to think about how you have managed a crisis in the past and to discover what you did well and what you need to improve. Then you can be better prepared and more confident when the next caregiver crisis occurs.
Let me tell you about Monica – a true story. Monica had been home from work for a few hours and was enjoying her third glass of wine. The phone rang and it was the hospital calling to tell her that her father had fallen, had hit his head, and was unconscious. (Sounds like a typical caregiver day – right?) She jumped in the car, forgetting to grab her purse, and drove to the hospital. About a mile from the hospital, she sees a police car behind her signaling for her to pull over. The police officer begins by asking for her license, which she forgot to bring with her. Next, the officer smells alcohol on her breath and proceeds to have her take a breathalyzer test, which she fails. She is arrested for drunk driving. Of course, Monica doesn’t make it to the hospital to be there for her dad.
I don’t need to tell you what she did wrong. It is obvious. She now knows that she should have been more prepared. She could have had a crisis plan that could have slowed her down for just a few minutes so she could have thought more clearly and made better decisions.
How are you in a crisis?
Think about a time when you handled a difficult situation really well. What did you do that made it easier, better, more manageable, etc?
Now think about a time when you panicked, mishandled a situation, or when you didn’t make the right decision. What got in the way of you thinking clearly enough to cope with what was happening?
Don’t worry that you struggle. We all do. We are all incredibly human. This is why I want you to create a plan that can help you get calm, to ask for help, and then think more clearly.
Everyone is different when it comes to what will help them calm down. For me, it is picking up the phone and calling a friend. For my brother, it is taking a walk and getting some air. For others, it might be taking a couple of deep breaths, having a quick cry, praying, counting to ten, or doing research on the Internet. You will need to think about what has worked for you in the past that has helped you get your emotions under control. Go to page 5 and write down what will help you stay calm.
Why getting calm matters
The problem with decision making in a crisis is that our emotions have taken over our brains and this leaves little space for us to think rationally. The initial surge of emotion and adrenalin lasts approximately 90 seconds. Then, every time we think additional panicky or scary thoughts, we fire off 90 more seconds of emotional chaos. The goal of slowing down for a few minutes is to give your emotional brain a chance to calm down which will then allow your rational brain time to get activated.
(This is why Monica shouldn’t have rushed out the door. If she had sat still for a few minutes, she could have thought about getting someone to drive her to hospital. If she had calmed down even a little bit, she might have remembered her purse or called for someone to come and help her.)
You have more strength than you realize
You have more control and strength in a crisis than you realize. You can take control of your brain if you don’t keep telling yourself things that get you more upset. Instead of telling yourself, “Oh my goodness…I am so afraid…I can’t believe this is happening…Oh no this is the worst thing that could happen, etcetera.” Tell yourself, “I don’t have time to be upset right now…I have to focus on figuring out what is the right thing to do.” Tell yourself that you can cry, scream, or be afraid later on, but right now, you have to think. Say to yourself, “I am calm and focused. I can listen and understand what is happening and make a good decision.”
Here are ideas for what you might need to do before you run out the door:
• Ask someone to watch my kids.
• Arrange for someone to stay with the other person I am caring for.
• Tell my boss I have to leave.
• Have someone come over to drive me since I am still hysterical.
• Pack a bag because I may need to stay over night at the hospital. (I had a bag that I kept in my trunk filled with what I would need when I had to meet one of my relatives in the emergency room. I made sure I had a sweatshirt, bottled water, snacks, change for the vending machine, a book to read, and a change of clothing.)
• Pack my phone and/or computer charger. (I wish I had remembered this when I went to visit my mom in the hospital and ended up staying there for four days straight.)
• Pack my list of phone numbers.
• Grab this crisis action worksheet.
• Bring a list of person’s medications and medical history.
• Bring my own personal medications that I will need later on today.
• Pack a book to read or something to do while I am waiting.
Trust me. You will be so glad that you stopped and went through this list before you rushed out the door. Not only will you be more prepared, but by reviewing this worksheet, it will help your brain calm down. Before you read the next section, go to page 5 and fill in what you need to pack. Make sure you think about what you might need and what your loved one might need, etc. I am sure you will keep adding things to this list.
If you have to make an important decision in a hurry:
Ask how much time you really have. Oftentimes, the doctor says you need to decide right now, but really you could have a few minutes, a few hours, or even a day. Sometimes the doctor will want you to rush because it convenient for his/her schedule to take care of the crisis right now or the doctor may be worried about his/her legal liability if you wait too long. Ask the doctor how long you really have to make this decision.
Even if you only have a few minutes before you need to make the decision, take a couple of deep breaths or take a quick walk outside. Do whatever you need to so you can get past the initial 90 second surge of emotions that is getting in the way of thinking clearly.
What do you need to find out so you make the decision?
1. Find out the facts. I would encourage you to ask another person to help you listen and to have someone write down what is being discussed or record it. When in a crisis, your mind is not working as well as it usually does, so it helps to have someone there to be a second or third set of ears. If you don’t have anyone there with you in person, do a conference call with a friend or family member who can listen and ask questions. If you don’t know how to do this, ask someone there to help you or to use their phone.
2. Ask the healthcare professional to talk about the all the possible options/solutions that are available. There is rarely just one option or choice. You will feel better later on if you feel like you had a real choice in the situation.
3. Ask about how each of these solutions would play out over time. Too often, people forget to ask what will happen in the long-term. Yes, right now is really important, but make sure you ask about how your decision will play out in the future. How will the patient’s quality of life be changed by this decision?
4. Ask about the risks of choosing the solution the person has recommended. One of the biggest dangers in picking a solution too quickly is that we don’t ask about the downside or possible negative outcomes. We are so anxious to have things work out okay, that we forget that there is no perfect solution or solution without risks.
5. If you are a person who needs to write things down, then do so. If you are a person who needs to talk things out, then talk. Use whatever strengths you have when you usually problem solving. For me, I have to do some research on the Internet and then talk to someone I trust. After that, I can make my own decision. Stop for a minute and think about what you usually do when you have made good decisions in the past.
6. Make the decision. I know you wish you had more time. I know you wish you had more information. And I know you wish you knew for sure that this is the right thing to do. We can never know for sure. All we can do is the best we can based on what we know at the time and what kind of pressures are on us in that moment.
7. Now that the crisis is over, see if you need to modify or improve the plan. You can’t go back in time and change what has already happened, but you can see if you need to put an even better plan in place. This is life. We can only go forward from where we are.
8. Get some support for you. Now that the crisis is over, you need to get some comfort and support. Reach out to the people who make you feel better or stop and do the things that make you feel better. Caregiving is never about just one crisis. It is a long journey with many crises and decisions. This is why you need to begin building a support system around you so you can survive the long caregiver’s path.
It is time for you to create your own action plan.
Make copies of all of this paperwork and put copies in your car with your caregiver bag, in your briefcase, a drawer at work, in your purse, near your front door with the bag you have packed, and/or in the drawer where the person you care for lives. You can also email yourself a copy or to friends/relatives who could fax it to you at the hospital. You will also want to add a copy of the person’s Advance Directive for Healthcare, Living Will, Durable Power of Attorney, and other documents you will need.
This crisis action plan worksheet will only work if you have it with you.
My Crisis Action Plan
Here is what works for me when I need to calm down my emotional reactions:
What will I need to do or to pack before I run out the door?
Who will I need to call and what are their numbers?
Doctor, paramedics, hospital or nurse helpline, insurance company, family, friends, hospice nurse, palliative care team, suicide hotline, etc. Once you have gotten to the emergency room and the person is being cared for, your first job is to call the insurance company and let them know what is happening so you don’t end up owing more money than you should.
Who could come over and be with me right away?
Who can give me emotional support on the phone?
Who do I need to call to let them know what is happening?
Who can I call to help me figure out what is the right thing to do?
Who can I call to help me do some research on the internet?
While I am waiting for the ambulance, the doctor, or for help; I can decide what questions I will need to ask and what I will need to tell the professionals about what has happened?
What is important for me to tell them about my loved one’s condition and healthcare preferences?
Information to have ready (Use the back of this sheet for your notes)
1. Attach copies of the person’s advance healthcare directive, living will, durable power of attorney for healthcare, POLST/MOST/MOLST/POST form, and/or other legal documents.
2. Bring “List of Questions to Ask When Making the Medical Decisions”
Download from Viki’s resource page on her website: www.TheCaregiversPath.com.
3. Attach information about the person’s medical history
Ask the primary care doctor for a copy of the person’s history and physical. Staple this information to this worksheet.
4. Bring “List of Medications,” including any vitamins and herbs. Bring the actual bottles with you.
You will need to update this each time there are changes in the medications. Staple this information to this worksheet
10 Quick Tips for Crisis Decision Making
Do something to help yourself calm down. Breathe.
1. Ask how long you really have to make the decision.
2. Get the facts. Have someone do some research for you if you aren’t near a computer.
3. Ask about other options.
4. Ask what would happen if you chose these other options.
5. Ask about the positive and negative consequences of each of the possible choices.
6. Ask about the short-term and long-term consequences of each choice.
7. Have someone else help you listen to what is being said and to take notes and/or record it.
If nobody can be there with you, have the person call in and listen to the conversation over
8. Make the decision realizing that you are doing the best you can in this crisis situation.
9. After the crisis is over, think about whether you will need to modify or improve the plan.
10. Now that the crisis is over, get yourself some support. You just went through a lot.
Have a kind and respectful day.
Too often we underestimate the power of a touch, a smile, a kind word, a listening ear, an honest compliment, or the smallest act of caring, all of which have the potential to turn a life around. Leo Buscaglia
I have never been very good at asking for help and like many family caregivers, I didn’t think that my own needs mattered. Thinking I had to do everything all the time caused me to have two breakdowns; once during my early years of caregiving and again the last year of my caregiving journey. (I was a caregiver for over 17 years.)
I wish I had known about the following statistics from the MetLife Study:
Family caregivers experiencing extreme stress have been shown to age prematurely and this level of stress can take as much as 10 years off a family caregiver’s life.
40% to 70% of family caregivers have clinically significant symptoms of depression with approximately 25%-50% of these caregivers meeting the diagnostic criteria for major depression.
Stress of family caregiving for persons with dementia has been shown to impact a person’s immune system for up to three years after their caregiving ends thus increasing their chances of developing a chronic illness themselves.
I don’t know which statistic frightens me the most. But I do know that I have paid an emotional, physical and financial cost for being a caregiver. (I also loved taking care of my family.)
But it didn’t have to be that way. I could have and should have asked for help. But I am a caregiver and when people told me, “Just make time for yourself,” it wasn’t that easy.
If you think about who in a family becomes the caregiver, it will usually be the person who is more nurturing and generous with their time. So by nature, the caregiver is the type of person who already gives more than others. And this becomes a vicious cycle of give – give – give instead of give – receive – give – receive.
I recently said to my friend who is an overwhelmed caregiver, “Maybe now is a good time for the rest of your family to learn what they need to do to help their grandfather.” What I heard back from her were lots of excuses:
They don’t want to help
They don’t know what to do
They don’t know him like I do
They will just make it worse
I don’t have time to teach them
It is just easier if I do it
I get tired of asking
I don’t think they would help, even if I asked
Why should I have to ask, they should just know what to do
I don’t want to be a bother
It is too much effort to ask
Sound familiar? I realized in that moment that it isn’t always that the family won’t help; it is the caregiver who is resisting asking for help. So let me ask you. If you had a broken shoulder, would it be okay to ask someone to carry your groceries to the car? If your car broke down, could you call for a tow truck? When your loved one needs help, don’t you get them the help you need? Then why don’t you deserve the same attention? Your needs matter and you deserve to have someone help you.
Viki’s Four-Step Process
I encourage you to explore what is keeping you from asking. Write down what goes through your head when someone says, “You should just ask for help.” What are your resistance statements?
Take your list of resistance statements and put a statement beside it to help you get past what has been preventing you from asking for help. Here are a few examples caregivers have come up with:
They don’t want to help – Well I don’t know this because I haven’t given them a chance
They don’t know what to do – I could teach them
I don’t have time to teach them – You don’t have time because nobody is helping you. If you teach them now, then they can help at other times in the future.
It is just easier if I do it– Only the first time.
Why should I have to ask, they should just know what to do – Would I have known what to do before I became a caregiver? Then how would they know?
I am not saying you will be able to get past your barriers right away, but you need to begin so you won’t break down like I did. One thing that helped me was to realize that the other person won’t do what needs to be done as well as I would. They may do things slower, awkwardly at first, and in their own way. But that is okay because you are going to get free time and your loved one will be okay.
Make a list of all the things that would help you such as practical, emotional, financial and information support. Write a really long list and carry it with you so when people say, “What can I do to help?” you can pull out the list, hand it to them, and ask them what they would like to do.
Ask for specific things:
Can you call mom each week and ask her about her favorite memories or talk to her about what is worrying her?
Can you call me every day to check on me? (This can be very helpful to keep your depression under control.)
I don’t have time to read this book about Maria’s disease. Can you read it and then send me the main points?
Can you research what is the best wheelchair to buy?
People can help from a distance:
Can your brother listen to Dad’s doctor’s appointment by speaker phone?
Can they do the shopping for groceries online and have the food delivered?
Could they pay for someone to come to the house to give you a massage?
Can they take over paying the bills or set up automatic bill pay for you?
Can they send $51 a month so you can pay for three hours of respite care?
Ask someone to create a phone tree to disseminate information. This way you don’t need to make all the calls. Have others spread the news.
Mom needs a ride on Thursday for her haircut.
Could you pick up some milk and eggs when you go to the store today?
I need someone to come and clean my kitchen.
Can you sit with Bob on Thursday night so I can go to a class about coping with dementia?
These are just a few ideas. I am sure you can come up with lots of ideas, big and small. (Don’t hesitate to put everything on the list. You will be surprised by what people are willing to do.)
Ask a lot of people. You may need to ask 5 people to find one that will help you but that is okay because now you have one person who will help you. Ask people for things they can actually do. Different people have different abilities. Show them the list and let them choose what they would be comfortable doing. Tell them the deadline for when the task needs to get done.
Oh no, I hear your resistance statement coming through. “There is nobody I can ask.” Here is my response to break through your resistance. There are more people in your circle of friends, family and community than you think. Call a local faith community and ask for help. (You don’t even need to belong to that church or synagogue.) Call the Area Agency on Aging in your town and tell them what you need. They can help connect you to resources. Tell the people in the hair salon about the struggles you are facing and maybe they know someone who can help. Many high schools are requiring kids to do community service hours. Call the school and ask to have someone assigned to help you.
It may feel like a lot of work to begin to ask, but don’t let this stop you. This is another of those resistance issues. Remember that you are not just asking for this one time, you are training this person for the future. If you can get them to trained and used to helping, they might be able to help you every week or two.
Lastly, give gratitude even when you think your family should feel obligated to help. Of course they should but let’s be realistic. Our practical goal is to get them to help more than they have been. Saying thank you and giving words of appreciation go a long way to reinforce good behavior. And if that doesn’t work, you can always say, “If you don’t have time to help, then you are going to have to pay to hire someone to help me.” That will get their attention.
Have a kind and respectful day.
Avoiding the Pitfalls in CPR/DNR Decision Making
Examine the obstacles to good DNR decision making.
Discuss what is CPR and the perceived vs. actual chance for success.
Demonstrate best practices for communicating about CPR.
Consider how the signing of the DNR is just one component of
Older adults and their loved ones are being asked to make difficult end-of-life choices about CPR (cardiopulmonary resuscitation) and its refusal, DNR (do not resuscitate). These decisions are fraught with emotional angst and misinformation. In the past, we only used CPR on patients who were having a heart attack and who might benefit from receiving CPR. Now we use it for everyone, including those in a terminal state, whether it will work or not.
One of the complicating factors is that CPR used to be very simple to understand. Now, the general public doesn’t realize that when the doctor says CPR, she is including medications, intubation and ventilator support. A common misunderstanding occurs when people are given the misleading choice of a “chemical code only.” As nurses and doctors will tell you, if the doctor gives the medicine but doesn’t do the chest compressions to move the blood around, the medicine will not circulate in the body. Without circulation, the medicine can not do its job.
Another factor is that the decision about CPR has inappropriately become an indicator of a person’s complete end-of-life wishes—but the decision about CPR should be only one part of the treatment plan. A patient may want chemotherapy, surgery, radiation therapy or other kinds of aggressive treatments and still may want to be a DNR. Or the person may not want other medical treatments but still want to receive CPR. These are all separate decisions and any combination is possible.
One positive change is that the language of DNR has been modified to “do not attempt resuscitation” (DNAR) or “allow natural death” (AND). Both of these help to clarify the confusion. Do not attempt resuscitation truthfully explains that just because CPR is attempted, doesn’t mean it will work. If you ask healthcare professionals, “How many of you would like to die by CPR?” No one ever, ever raises a hand. What they know, but don’t always share with their patients, is that the chance of CPR working is minimal, sometimes even 0 percent. On television shows like ER, CPR brings the patient back to life about 75 percent of the time (Diem, Lantos and Tulsky 1996), when in real life it only works, at best, 17 percent of the time on healthy patients (Peberdy, et al. 2003). In many real-life situations, the chance of success is zero.
William J. Ehlenbach, MD, lead author of a study of CPR in the elderly, published in the New England Journal of Medicine in 2009, explains, “CPR has the highest likelihood of success when the heart is the reason, as in an ongoing heart attack or a heart rhythm disturbance. If you’re doing well otherwise, CPR will often be successful. But, if you’re in the ICU [intensive care unit] with a serious infection and multiple organ failure, it’s unlikely that CPR will save you” (quote from Gordon 2009; study published by Ehlenbach et al. 2009).
The newest term, allow natural death or AND, is a more gentle way of saying do not resuscitate. Instead of stating what won’t be done for the patient, the doctor is offering to allow the patient a peaceful, natural death and will not attempt resuscitation. Because the CPR/DNR decision is about more than medicine, it frames the dying experience for the patient and the loved ones. For those who are making the CPR/DNR decision, it is important to balance the chances of CPR working and bringing the person back in a good condition with the desire for a good, peaceful and dignified death. This is why healthcare professionals wouldn’t want to die by CPR; there is nothing peaceful or dignified about this type of death.
Case study 1:
Mr. Jackson is a 67 year old gentleman who has end-stage Alzheimer’s, is unable to eat and recently had a feeding tube placed. The patient does not have an advance directive and never told his kids what he would want done and unfortunately, his doctor didn’t ask about his CPR wishes when he was in the early stages of the disease. The physician is now asking, “Would he want CPR?” His adult children have been through a lot over the past years and are overwhelmed by the question. The thoughts running their minds are, “Is it time? Are we giving up? I don’t want to make this choice but I can’t stand watching him suffer any longer. If I make this decision, does that mean I have lost my faith?”
How can the healthcare team help guide the adult children through this decision making process? What are the underlying issues that will make the decision more difficult to make? What statistical information might make the decision easier? What grief support can the healthcare team provide to ease the process?
Discussion – Mr. Jackson:
How can we as aging professionals help those we serve as they struggle with these difficult decisions? One of my roles as a bioethicist is to assist families, like Mr. Jackson’s, who are making the difficult decisions. I am not there to tell the family or healthcare team what to do, but to help those involved to think through the issues so they can make a more informed decision. It is important during these conversations that we keep the patient’s wishes and needs at the forefront.
When working with Mr. Jackson’s son and daughter, I would make sure they are educated about CPR. Hopefully, Mr. Jackson’s doctors will not have eroded the trust and created a confrontational relationship by pushing for the DNR. I would need to be patient as these end-of-life conversations are a process, not a one-time event.
I would make sure Mr. Jackson’s children understand the possible outcomes of CPR. He may survive CPR but never be able to leave the hospital or he may be hooked up to ventilators for the rest of his life. Research has found if CPR is able to bring a patient back to life, the chance of the person going home with good brain function is about 7 percent (Kaldjian, et al. 2009). And in Mr. Jackson’s compromised condition, his chances are even lower. The typical success rate of CPR will depend on the health of the patient, the patient’s age, how quickly the CPR was begun and other medical factors.
Next, I would make sure that the family understood what can happen during CPR. Mr. Jackson may be brought back to life but in a worse condition than before, both mentally and physically. There is a chance of broken ribs, a collapsed lung, damage to the windpipe, and the longer he isn’t able to breathe, the greater the chance for brain damage.
Once the family understands the likely chance of CPR working and what kind of outcomes might be expected, I would then point out that by discussing that by choosing CPR, Mr. Jackson may not have the opportunity for a peaceful and meaningful death experience. I would ask his children, “When your father pictured the last minutes of his life, did he see strangers straddling him on a bed, pushing on his chest, with his family waiting outside his door? Or would your father want his family and friends gathered around his bedside, with words of love being expressed, music being played or prayers being said?” By asking these important questions, I am helping to contextualize the medical choices by explaining what it will be like for their father to experience CPR versus a more peaceful death.
Another common issue I may have to address is to relieve the guilt and angst of those making these difficult decisions. One gift I may be able to give Mr. Jackson’s children is to help them understand that it not really their decision. It is the patient’s decision. I would explain that as the decision makers, they are supposed to consider all that they know about their dad, what he has told them in the past, what his values are, and what would be important to him. Using this information, they should do their best to make the decision they think their father would make.
I would gently ask, “What would your dad be telling us if he were able to understand what has happened? What would your dad say about wanting CPR?” And then I would be quiet and let them sit with the question. In most situations, the family will know the answer but it will be painful for them to verbalize the choice. I would then acknowledge how loving and courageous they are to honor their father’s wishes. No matter what decisions are made, it will be important that this family receive emotional and spiritual support as they struggle with these issues.
Case Study 2:
Mrs. Garcia is an 83 year old woman who has multiple sclerosis. Her advance directive states that she does not want CPR. Her multiple sclerosis has developed to the stage where she has lost the capacity to speak for herself. Her husband is her decision maker and caregiver and he knows her wishes. Last week, Mrs. Garcia suffered a heart attack and is now in the ICU. This morning she coded and was brought back to life by CPR. Her husband has just been called to come to the hospital and was told that his wife survived CPR but her condition is deteriorating. What went wrong? Why wasn’t her DNR honored? What is Mrs. Garcia’s expected outcome after receiving CPR?
Discussion – Mrs. Garcia
What went wrong?
Unfortunately, this scenario happens more often than it should. When Mr. Garcia got the call about his wife, he was shocked and angered. How could this happen?
There are a few possibilities. Some doctors won’t agree to a DNR because of moral opposition and therefore won’t write or respect a DNR. While doctors are allowed to live by their morals and to refuse to participate in acts that go against their values, they are still obligated to let patients know about valid medical options and then let the patient or decision-maker decide. If the doctor is unwilling to do this, then the doctor should help the patient to find another doctor who is willing to talk about the DNR option. If the patient, family or someone from the healthcare team is worried about the patient’s rights being violated, he or she should call for a bioethics consult from the hospital’s bioethics committee.
Another possibility is that the DNR request from her Advance Directive was not transferred onto her hospital chart. If the DNR is not on the chart, it doesn’t exist. Whether you are the patient, the loved one or someone working with the family, make sure you go over the patient’s Advance Directive and other healthcare wishes with the doctor and make sure they are documented.
A final possibility is that medical miscommunication occurred. Perhaps the advance directive wasn’t sent up from the emergency room, the team couldn’t find the DNR, no one took the time to look for it, the on-call physician wasn’t familiar with the patient or numerous other mishaps. As much as the public would like medicine to be perfect, healthcare is significantly flawed and human.
What should happen next?
The first step will be to make sure the DNR order is written immediately. I would hope that apologies would come next. Administration, risk management and other hospital staff will be involved in resolving this situation. This event will be evaluated to determine what caused this medical error and to take steps to make sure it doesn’t happen again. (But it will happen again, but usually not to the same patient.)
Ultimately, the doctor will need to sit down and to talk about where to go from here. Since the CPR was performed, what condition is the patient in? What options are available which would be respectful of Mrs. Garcia’s wishes? Is it time for a hospice referral? The doctor who performed the CPR may not be the best person to handle the situation at this point because of the broken trust. It may be necessary to bring in a different consultant to help bring peace to this situation. It will also be important to address Mr. Garcia’s anger and frustration with the hospital and the healthcare team. He will probably be devastated that his wife’s wishes were not honored and that she is still suffering. Appropriate social services should be brought in to help him with his grief.
Upon evaluation of the event, it appears that it wasn’t that Mrs. Garcia’s wishes weren’t respected, but her wishes were not known (because no one read her advance directive) and the CPR/DNR conversation never occurred. This is also a common problem in healthcare. Many physicians are uncomfortable talking about end-of-life issues. I would hope that healthcare professionals don’t just talk about the medical choice of CPR but would also talk about what kind of life one would want after CPR and what kind of death is desired. The following questions are just as important as, “Do you want CPR?”
Where would the person want to die?
Whom would the person want to be with as he or she dies?
What would bring peace and comfort during the dying process?
For many people, CPR just prolongs the dying process, is this okay?
The conversation about CPR and other end-of-life decisions is a journey of informing, understanding and helping to support the person who has the difficult choice to make. As professionals, we have to find the courage to walk with our patients as they move through their illness and toward death. As patients and family members, it is important to have these conversations early on and I would encourage everyone to ask for the answers and support you need. If the doctor won’t talk to you, find a doctor who will. And if after talking with the doctor, you realize he won’t respect or support the patient’s wishes, find a doctor who will. Once you have made the decision, write it down and tell others what you would want. Don’t make them guess.
A final thought: I am not saying that people shouldn’t choose to attempt CPR; I just want to make sure patients and their loved ones have the facts about what is CPR, the chance of it working, the kind of condition the person might be in after CPR and the kind of death that is being chosen. Make wise and informed decisions for yourself and for those in your care. Have a kind and respectful day.
What are the common misunderstandings about CPR?
When talking about DNR, what other issues should be discussed?
What do you think would get in the way of you making a good decision for your loved one?
What decision would you make regarding CPR/DNR and how does that affect how you interact with those you serve?
Diem, S. J., J. D. Lantos, and J. A. Tulsky. 1996. Cardiopulmonary resuscitation on television: Miracles and misinformation. New England Journal of Medicine 334 (24): 1578–82.
Ehlenbach, W.J., A.E. Barnato, J.R. Curtis, et al. 2009. Epidemiologic
study of hospital cardiopulmonary resuscitation in the elderly.
New England Journal of Medicine 361 (1): 22–31.
Gordon, S. 2009. CPR Survival Rates for Older People Unchanged.
HealthDay: News for Healthier Living, July 1, 2009.
Kaldjian, L.C., Z.D. Erekson, T.H. Haberle, et al. 2009. Code status discussion and goals of care among hospitalized adults. Journal of
Medical Ethics 35 (6): 338–42.
Peberdy, M.A., W. Kaye, J.P. Ornato, et al. 2003. Cardiopulmonary
resuscitation of adults in the hospital: A report of 14,720 cardiac
arrests from the National Registry of Cardiopulmonary Resuscitation.
Have a kind and respectful day.
Patience – Lessons Learned - KindEthics.com Newsletter
Quote of the Month:
The individual is capable of both great compassion and great indifference. He has it within his means to nourish the former and outgrow the latter.
I love when life reminds me of the lessons that I thought I had learned, but then I find out I need a refresher course. This month’s newsletter is about having patience, but not just your average patience, instead good-natured and seeking to understand patience. There are two parts to this story.
The second part first:
Two weeks ago I had to make about 50 phone calls to set up the events for my book tour in July. As I was contacting different groups and reaching out to the community organizations that help those with differing levels of capacity, I was on a roll. Each call was a wonderful opportunity to connect with like-minded people about our common goals. I tend to be a quick person and was enjoying the speed with which I was accomplishing my tasks. Then it happened, I contacted some organizations that focus on helping those who communicate more slowly or differently, and all of a sudden, my world slowed down. The reason being, the people I needed to talk to also suffered from the same issues of communicating differently. What had taken me 10 minutes to accomplish on other calls, now took me 25 minutes.
I had a choice. I could politely excuse myself from the call and just move on to someone else. I could get frustrated or start multi-tasking while I waited for them to say what they needed to say. Or, I could be present, slow myself down, listen differently and be patient. I realized that patience was not about “waiting it out,” but it was about staying connected with an open heart as I remembered I needed to listen differently.
When I did this, I heard amazing things. One gentleman with bipolar disease told me that he hoped others would understand when he said, “I can do it – Until I can’t.” I had never heard this phrase but it was a gift to me because it so clearly explains the needs of someone with a fluctuating mental illness. I had understood the concept as this is exactly what I talk about throughout my book. Keeping people included and empowered, despite their limitations, until those instances when they need us to step in and protect them. But I hadn’t had such an easy way to say it. I am so grateful he shared it with me.
Part 1 of the story:
Back in March, when it was Brain Injury Awareness Month, I was fortunate to connect with a wonderful woman named Tammi Diaz. She suffered a traumatic brain injury when she was hit by a car, but she has overcome her injury, found a new way to be, and is a wonderful advocate for those in her community. I contacted her because I wanted to interview her on my online radio show because I thought it would be great for my listeners to hear first hand from someone who still deals with the effects of a brain injury. When I first spoke with her, I was acutely aware of her slightly slower speech. Not much slower, but just enough to notice. She shared with me her stories about the amazing way she advocates at the state legislature and her passion for improving the public transportation in her community. Coming from a show biz background as a child, I wondered if my listening audience would keep listening once they heard her voice. I realized I might lose some listeners but that was the whole point of the show, to get people to hear from people struggling with brain injuries. (You would have thought that a few weeks later, I would have known that I needed to be patient when I was making all those phone calls. But my own agenda and schedule got in the way. Lesson re-learned.)
I booked her on the show along with the director of the Brain Injury Association in Utah. What a wonderful and inspiring interview. I realized that we don’t hear these types of voices in the media or on television shows. This is a silenced community like so many who struggle with mental illness, dementia, developmental delays etc.
So what is in this message for all of us? I hope that you can remember to slow down and to listen differently when you are talking to someone with a speech or brain disorder. Don’t rush, don’t complete their sentences, don’t get annoyed and don’t think it isn’t worth your time. The gift of understanding that you may receive from someone who experiences the world differently is inspiring. I am so grateful that I got the opportunity to practice what I teach. Each phone call brought a gem of knowledge and a connection with a terrific person. Please role model this kind of behavior for your kids, your colleagues and for others in the public when you can see a store clerk growing impatient with someone with a disability. We can make a difference in the lives of others, by listening with a generous heart and a good-natured attitude.
Have a kind and respectful day.
KindEthics Newsletter November 30, 2009
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The great secret that all old people share is that you really haven’t changed in seventy or eighty years. Your body changes, but you don’t change at all. And that, of course, causes great confusion. Doris Lessing
Putting The Human Back Into Nursing Homes:
One day when I was visiting my aunt at the skilled nursing facility, the woman that shared her room was complaining to the nurses aide that she was tired and she wanted to put on her nightgown and go to bed. The aide told her that she couldn’t go to bed, because it wasn’t allowed until after dinner. I remember at the time thinking how strange this was. Why couldn’t this woman go to bed? If she was tired, why couldn’t she take a nap? My dad took naps, I take naps and lots of other people take naps. I realize looking back that what this woman wanted/needed didn’t fit in with the schedule of the nursing staff or the institution. When did the needs of the staff become more important than the needs of the resident? When did the nursing home staff become the boss of the resident? When did the residents lose their right to having their basic needs and decision making power taken away from them?
(This bothers me a lot as I am writing this. I can imagine the day when I am living in a long term care facility and someone won’t let me nap. I love to nap and can’t imagine that this would be taken away from me just because I am old. But it isn’t just about the nap, this is about our human need to be listened to and to be respected while we receive the care we need.)
I have been reading The Erosion of Autonomy in Long-Term Care written by Charles W. Lidz, Lynn Fischer and Robert M. Arnold. This book takes a look at the history of long term care facilities and where we are today. As you can tell by the title, the right of the patient to be heard in these facilities is slipping away.
The authors write that what once was a home-based environment to serve the needy in our small communities, has morphed into a hospital-like institution where the rules dominate the humanity. The residents who “behave” and are “compliant” are good and those who want something that isn’t on today’s schedule are “bad”.
This makes me wonder if the people we store in nursing homes are as impaired when they get admitted or if the institution itself, takes away their voice and their interest in life. (I know I just said store in nursing homes. Perhaps that is too harsh a word, but have you visited a nursing facility lately? Have you seen what kind of life these people are living? If you haven’t, I would suggest that you visit your local care facility.) Another concern I have is the growing number of people being abandoned by their families in nursing homes. There are laws against abandoning your pet, but we allow people to be disposed of and forgotten in these institutions. Something has to change and it has to change soon.
Now I am not saying that people are being mistreated in care facilities, (of course a few are and that is why we have ombudsman to protect them), but what I am saying is that it is no kind of life for the residents at most of these places. But this doesn’t mean it can’t be improved and that some people know how to get it right. I recently talked with a woman who raved about the place where her mom was staying. Her mom had been admitted to one facility and when it became evident that it wasn’t a good place, she took the time to find a better place for her mother. Advocacy and effort matter when it comes to our loved ones.
So, here are some organizations that are helping to get it right.
The Pioneer Network http://www.pioneernetwork.net/
The GreenHouseProject Homes http://www.ncbcapitalimpact.org/default.aspx?id=148
The Eden Alternative http://www.edenalt.org/
National Consumer Voice for Quality Long Term Care http://nccnhr.org/
There are four states receiving financial incentives from Medicare to change the culture of nursing homes. Arizona, Mississippi, New York and Wisconsin. If these incentives work, then these programs will be spread to other states.
The Nursing Reform Act is also working to promote and mandate the changing of nursing facilities from institutions into a more home-like environment. Where people can live without hearing bells and alarms going off or being told when they are tired. Where people can get up when they want to, eat when they are hungry and be treated as an individual. You can download information about the Nursing Home Reform Act at http://www.resource4nursinghomeabuse.com/images/pdf/nursing_home_reform_act.pdf
I think if I was granted one wish, this is what I would wish for. That long term care facilities could become home-like and that people wouldn’t be abandoned in them. I don’t have the answers but I do know that others do. If you are interested in being part of the change, volunteer at your local nursing home. Connect with one of the organizations that are making a difference. And if you are a healthcare professional, make sure you visit the facilities you are recommending to your patients. Don’t take someone’s word for it that it is a nice place, go there yourself. See what is being served for dinner and sit and watch what is happening. You will be surprised by what you see.
Have a kind and respectful day.
Quote of the month:
“The great gift of human beings is that we have the power of empathy.” Meryl Streep
Last year, during one of my lectures about end of life communication, a doctor asked me some questions about hospice care. He explained that his question was about his wife who had end-stage lung cancer. They were still trying to fight the disease but the disease was winning. He wanted to know more about the option of hospice and if it would be appropriate for his wife. I told him I would speak to him in greater detail after the lecture.
After the lecture, he began to tell me about the medical condition and the medical treatments that his wife was going through. This was a man who loved his wife and was desperate to keep her alive. After listening to the story, I asked what his wife would say about continuing with the treatments vs. going on hospice. I wanted to hear her point of view. I asked him directly, “What would your wife tell me about what it is like to be going through this and how does she feel about it.” He then began to tell me about what he was experiencing and how exhausted and overwhelmed he was. I realized I was talking to someone with incredible caregiver fatigue. I listened and tried to be supportive. I recommended support group options and other services that might help him with his fatigue.
Then once again, I asked about how his wife perceived her experience. He couldn’t answer. Again it became about medicine. It was as if he was reporting on an intriguing patient. I found it fascinating that he could not begin to explain or to experience what his wife was feeling. In the hour I spent with him, he could never say my wife would say … or my wife would want… This was not because he didn’t care about what she was experiencing, it was because he cared too much that he couldn’t begin to comprehend what was going on inside her.
So many things were going on. The first issue I was dealing with was denial. He didn’t want to believe that he couldn’t fix this for his wife. Doctors want to heal and even more so, they want to heal the ones they love. He was trapped inside his profession and could only focus on what medicine had to offer his wife. He kept dancing on the edge of the topic of death by asking about what hospice might have to offer but ran away from it as I described the benefits of hospice. To choose hospice felt like choosing death. And he couldn’t begin to accept that death would be taking his young wife very soon.
The second issue was that he was treating his own wife. He was one of her doctors so he had disconnected from her by making her the patient. This is why doctors aren’t supposed to treat their own family or close friends. When a doctor treats their own loved one, he can become blind to what is in front of him. This gentleman was a good doctor and he would have put any of his other patients in this end-stage condition on hospice. But he couldn’t see that as a valid option for his own wife. He was blinded by his love.
The third issue was that he couldn’t empathize with what his wife was feeling. It hurt him too much to begin to imagine what this was like for his wife. This was not a man who couldn’t speak of emotions. He expressed his own emotions about the situation freely. But he couldn’t tap into his empathy for “his patient” or “his wife” because it was too painful. Our brain can only feel what it can survive feeling. It shuts down when it becomes too much. His deep and profound pain was palpable and I hurt for him.
My heart hurt for his wife as well. I tried to explain that his desperate need to cure her was limiting her option of having good end of life support. (Okay, I didn’t say it quite that way.) He told me her pain was not being managed (in technical terms), even though he was trying to help her. I explained that hospice is really good at pain management and he should use them as a resource. I also explained that hospice provide the intangibles such as support for the family, support for him and a safe person for his wife to talk to about her hopes and fears. When communicating about the upcoming death is forbidden, the patient misses out when they are unable to say what they need to say. Her voice wasn’t being heard in the treatment decisions and her existential suffering wasn’t being addressed.
This is one of the best gifts of a hospice. The person has a safe person to talk to when she can’t talk to her own loved one. Or if they don’t have a hospice worker, a good friend or family member can be this person. I wish that the spouse could be this person, but often it is too painful. This doctor/husband was not unusual. He could not bear his wife’s suffering. I meet many people who can not talk to their own loved own about dying. That is why I am there. That is why we have social workers and chaplains in hospitals. Doctors can also be this safe person if they have the courage to take on this role.
I don’t know if he was able to get some support for himself and his wife and if her pain is being managed. I hope so. I know that I can only go so far with someone in denial. I can only dance on the edge of subject with them so they won’t feel so alone or afraid. Eventually, the person will come closer when he or she is ready.
When we want to help others we need to have the courage to:
See the suffering
Acknowledge the suffering
Do something about the suffering, then
Heal our own suffering
Quote of the day by William James: “Whenever you’re in conflict with someone, there is one factor that can make the difference between damaging your relationship and deepening it. That factor is attitude.”
Taking Action to Solve the Healthcare Conflict
It doesn’t matter who is the problem or who is at fault. You have to take action now to get the conflict resolved and to move forward taking care of your loved one. If you have been part of the problem, say you’re sorry. If you aren’t the problem, don’t worry about getting an apology. You don’t have time to stay angry. Your loved one needs help. The first thing you want to do is to deal with any conflicts when they first arise instead of letting them escalate. There are problem solvers throughout the hospital: The social worker, the charge nurse, the chaplain, the bioethics committee, the hospital administrator and in some places an ombudsman. These people have been trained to help facilitate the conflicts that occur in the hospital. If the conflict is happening in the doctor’s office, then you are on your own. But don’t worry, after you read the next few pages, you will be a much better problem solver yourself.
The first thing you need to do is to look at your role in the conflict. Am I making this situation better or worse? What could I do to make this situation better? Is this how I would react on a normal day? Or am I just overwhelmed, afraid, in shock or in grief and I’m having a hard time coping with this situation? Sometimes we need to take a timeout to catch our breath before we can interact with others and make any meaningful decisions. It is normal for you to feel the pressures and weight of these decisions. When any of us are in a crisis, we are not at our best. But unfortunately, you may not have the time to process what you’re going through and be able to feel like yourself again. Sometimes we have to make the decisions while we are stressed. Let people know how hard this is for you so they will understand what you are going through.
A couple of questions, you can ask yourself, may help you begin to see the situation differently. Are you making inaccurate assumptions? Sometimes we have misunderstood or not heard correctly what has been said to us. Before you get upset, make sure that you have the right information.
Are you more interested in “being right” or “getting it right”? This is a tough one. If you are determined that your way is the only way you, then you are going to have a difficult time resolving the conflicts with the healthcare team. Too often people discover that the way they thought things should go, turns out to be a mistake. I have seen this many times when the bioethics committee comes in to help with the ethical dilemma. The doctor is determined that his way is the right way and he is frustrated that the patient will not agree. Or the patient’s loved one comes in ready to do battle. Here’s what happens. As the meeting goes on, the people in the room hear the other parts of the story that they didn’t know before. Perhaps the doctor finds out that the reason the patient doesn’t want to do the surgery is because there’s no one at home to take care of them. The patient isn’t trying to be difficult, they are just feeling helpless. Or the patient’s family finds out that they have misunderstood what the doctors said about the disease or the possibilities of a cure. Once the misunderstandings have been cleared up, people calm down and new decisions can be made.
You have a lot of power in all of these interactions. You have the power to escalate or de-escalate the anger. You might say something like, “That’s the stupidest thing I’ve ever heard.” Well you can say this but it is only going to make the other person angry and you will still be no closer to getting what your loved one needs. Instead you might want to try a different approach. You might want to say, “Let me see if I understand what you are saying.” Or, “It seems like we both are trying to achieve the same thing but in different ways. Maybe if we …” If you think there is some miscommunication going on you can say, “I heard what you said. Let me repeat it back to you to see if I have understood you correctly.”
When I tell people this idea, people will say to me, “I don’t like what they are saying and I don’t agree with what they are saying.” Of course you don’t agree. You are in a conflict. But I never said you should agree. All I said was that you should listen to their point of view. This is the secret that mediators use to solve dilemmas all the time. One of the main things a mediator does is to help the people in the room to stop and listen to each other. You are listening to figure out if there is new information you didn’t hear before, or if there is some kind of misunderstanding or if you can understand more about why the other person is so passionate about their point of view.
This is where your power is in the middle of the conflict. It is not in raising your voice or pushing for everyone to do it your way. The power comes from understanding what is really going on and hearing what the other person needs you to know about what this means to them. I will never say that to listen means to agree; not at all. It just means to listen.
When you listen to resolve a conflict, the anger and emotions will decrease and your empathy will increase. You may surprise yourself when you finally hear what they are really saying because you may find yourself feeling more compassionate and understanding of their position. You will know that the listening is working when the other person begins to calm down. The more you listen, the more you will be able to hear the deeper message behind the other person’s words. Unless you have a really bad person in the room, you need to remember that the people helping your loved one want your loved one to get better too. (If there is someone who is really bad on the healthcare team, why are you keeping them on your team? You are allowed to change who is caring for you in a hospital. You can always ask for a different doctor to be your doctor.)
You are probably not disagreeing about the goal of getting your loved one better; you are probably just disagreeing on the how. Give the person you are arguing with the benefit of the doubt and stop and listen to what they have to offer. You may like what you hear. (I have seen in many bioethics meetings that people will completely change their minds and agree with the other side once they understand what is really going on.)
You won’t be able to solve the problem until you understand the interests behind the position. What does this mean? It means that what the person is saying he wants is only part of the issue. The trick is to figure out what the demand really represents. Let me give you an example. The loved one is demanding that the patient get CPR. The doctor wants the patient to be made a DNR (Do Not Resuscitate). Now there is a conflict.
If I was helping these two to solve their conflict, I would first listen to try to figure out why it is so important to them to have their way. I would ask the patient’s loved one, “Why it is so important to have the patient get CPR?” They may tell me that they are desperate for the person to recover so they can ask for forgiveness. They haven’t been a good son and they want to say I’m sorry. Or they might say that it is against the patient’s religion to be a DNR. Or they might tell me that the patient said he would want CPR and they are trying to honor his wishes.
Do you begin to see now why what they want matters? If I can figure out why they want ____, then I can figure out how to help them. (And I figure this out by listening.) The same thing goes for the doctor. Why does the doctor want the patient to be DNR? Well perhaps the patient is close to dying and the doctor knows CPR won’t work. Or the doctor doesn’t want to prolong the suffering of the patient. Or the doctor doesn’t want to lose the business. Again, do you see why the why matters?
This is the power of listening. You can discover what is really going on behind the person’s demands and begin to figure out a way to solve it together. When you are listening, focus on figuring out what you have in common. Are you both trying to get the patient better? Are you both trying to respect the patient’s wishes? Anything you can find in common will become a starting place for problem solving.
I would like to give you a couple of quick tips to help you problem solve. The first is to separate the person from the problem. How do we do this? In these situations, it becomes a conflict between “my way” and “your way”. And we just keep battling until either one of us wins or we both get more frustrated. This doesn’t do the patient any good and it wastes our time. Let me give you an example. The patient comes in and he hasn’t been taking his medication. Usually the doctor would say, “Why haven’t you been taking your medication?” And what the doctor really means is, “Why are you being a problem?” This approach rarely works. So, instead you might want to say to the patient, “How are you and I going to solve the problem of the medicine getting into you?” The problem becomes the third person in the room. You have separated the person from the problem. Now the patient isn’t the problem, the problem is the problem. This takes the pressure off the situation and the two of you can begin to brainstorm to figure out a workable solution.
One quick note before you start brainstorming, make sure you remember to understand what the real issue is before you start. It is a waste of your time to work on solving the wrong problem. Is the patient not taking his medicine because he can’t afford it? Is he not taking his medicine because he doesn’t like the way it makes him feel? Or is he not able to cut the pill in half or open the medicine bottle? These are just a few examples of the many reasons a patient might not be taking the medications. Figure out what the real issue is and you’ll be able to solve the problem together.
The second tip is to use brainstorming to come up with more options. Brainstorming is when everyone comes up with new ideas on how to solve the problem. One technique which mediators use is to make sure the people in the conflict come up with at least three alternatives. This begins to break the conflict right away. It is no longer my way versus your way. As you begin, you can start with my way, your way or do nothing then work from there. You will find that the more options you can think of, the more likely you will be able to find a solution that people can live with. As you continue to brainstorm, you might realize that you could do a little bit of what you want and a little bit of what they want. Or you could throw out both of your plans and start again. Not only does brainstorming create a safe place to come up with new options but because you two are doing it together, it will change the experience from a combative process into a collaborative process.
Another you might want to do is to take a “time-out”. Not only does it help people calm down but in it also allows people to think about what has been discussed and to process what they have learned about the situation. We have all heard the phrase, “I have to sleep on it.” Sometimes we have to have patience and allow the other person some time to think. If you try to push someone who is not ready into making a decision, you may get a decision but it probably won’t last. The person will come back the next day and say, “I changed my mind.” I am not surprised when this happens because the person wasn’t ready to decide in the first place. Also, in some cultures, people need to go home and talk with their family or religious and community advisors. Allow people the space and time to make good decisions.
The most important part of this process is to work together. If you stay in a battle mode, you will continue to battle. When you stay in the war, the patient loses. Take responsibility for your part and make the effort to fix the situation. Be willing to say, “I was wrong. Or, I didn’t understand.” Realize that you can disagree without being disrespectful and hurtful. Figure out how you can invite this person into the problem solving process with you, especially during healthcare conflicts. You are still going to have to deal with this doctor or person on the healthcare team tomorrow. So it is better to peacefully resolve the issues than to create a battleground. Take the time to listen so you can begin to understand and empathize with the other person. You have the power to turn the conflict into an opportunity for things to get better.
Have a kind and respectful day.
Quote of the Day:
Arguing is really saying, “If you were more like me, then I could like you better.”
Cultural Communication Strategies
What I want to talk about today is the role of culture in our interactions both inside the healthcare system as well as in our daily life. What I want to focus on is our role in dealing with people from different cultures, religions and belief systems. So often we blame others as they are the problem or that they are making it worse when sometimes it is us. Today, I want to empower you to know that you can make a difference and you can make the interaction better. The communication strategies I will teach you will help with difficult relatives or co-workers as well as with your patients. For the next two paragraphs I will focus on the healthcare professional and then after that, everything I will discuss will be helpful to all of us.
Why should we be culturally aware in healthcare? When we ask questions about cultural and religious beliefs we can discover what treatments people are receiving outside of our care. Are they going to a healer, an herbalist, a shaman, an acupuncturist or someone else outside the healthcare system? If so, we need this information in order to protect them from harmful interactions with the treatments we are prescribing. We don’t have to like that they are going to see these people, just realize that they are. You can think what you like but be careful not to criticize them aloud because they will just hide the information from you in the future. If your patient is afraid to tell you the truth about alternative medicines, they may be in danger when they go into surgery.
We also want to know what their values are and how that affects their ability to choose the medical treatments we are offering. Many non-compliant patients are being non-adherent for very good reasons; reasons that are prescribed by their culture or religion. We don’t have to agree with their beliefs but it is important that we understand them so we can work together to find a way to get them to accept at least some of what we are offering them. And at the end of life, we definitely need to ask about how to respect their religion and culture during the dying process.
The most important reason though to be culturally respectful is because we’ve would want to be respected if we were the patient. It is very likely that your own doctor will be from a different religion or culture and you may find yourself in a cultural conflict as well. I would advise you to use “The Platinum Rule®” instead of the golden rule. This states that we should treat others as they wish to be treated, not as we would wish to be treated. (I have attached this article at the end of this newsletter.)
All cultures teach their members the preferred or right way of doing or being. We are each brought up in a family that teaches us the right way to behave. And because this training happens when were so young, we believe that what we’ve been taught is “normal” and “natural” and “right”. I am a Norwegian American, so what I believe is normal, natural and right is based on Norwegian values. So what I believe is normal and what you believe is abnormal. Yes, I just said that. Your beliefs are unnatural and not right unless you believe like I do. Of course this statement is ridiculous. This is a perfect example of the cultural anthropology concept of ethnocentrism. Ethnocentrism is the belief that the customs and practices of one’s own culture are superior to those of other cultures. With ethnocentrism in place, it will increase the differences between us and it will lead us to us versus the “other” thinking. The concept of the “other” is described as the “other” as being less than, less valuable or less intelligent. One might say, “There’s us and then there’s you, the other” in a derogatory manner. We need to realize that one culture is not better or worse, just different. If we were brought up in that other country or culture or religion, we would believe as they do. It just depends on where we were born. I know that there are valuable ideas and values to be found in all cultures even if they’re not exactly like mine. We all want our children to grow up and be happy and healthy. We all want to be able to pay our bills and to provide for our family. We are more alike than different. I encourage you to look for the positive similarities and focus on those during your interactions.
Most people who teach cultural sensitivity would tell you to not judge. I wouldn’t say that. I think it’s normal to make judgments and to have opinions. But we need to figure out how to acknowledge our judgments, then put them aside and not act on them, especially as professionals. Many times I walk into a situation and have a strong reaction to a person but I have to manage that reaction and rise above my bias or first impression. If you feel a judgment or criticism rise up in you, acknowledge it silently and then put it aside and treat the person with compassion and respect. You don’t have to agree with the person, just treat them well. Advocate for them as they may be vulnerable and unable to speak up for themselves because of the cultural or religious barriers. I tell healthcare providers that when you’re about to walk in the exam room or the hospital room, leave your biases or negative expectations outside the door and remember that this person still needs our expertise and support. We can do this anytime we are in an interaction which is getting us upset. We can control our actions and our words during the interaction.
Quite often people are experiencing “relocation stress” during their healthcare experience. Cultural anthropology defines “relocation stress” as the stress one feels when moving from one culture into another culture. Medicine is a culture. It has its own cultural rules, values and a hierarchy for communication. When people come into the healthcare system, unless they work in healthcare system, they don’t know the cultural rules and how to get what they need. And this creates stress on top of the stress they are experiencing about their illness or pending surgery. If you are new to the healthcare process, like my dad was when he went in for double bypass surgery, you need to ask more questions and bring an advocate with you.
So what can we do when we have to deal with people from cultures that we don’t understand or we don’t like. I’m here to tell you, you have a lot of power. Your expectations will affect the interaction. You may have something from communication theory called “selective perceptions”, which is where we only see what we want to see in order to justify our preconceived opinions. Let me give you an example. I have a relative I don’t like. (You probably do too.) Every time I interact with her, I look for things that will reinforce my belief that I don’t like her. So each time, I would find more and more things that confirmed this belief about her. And over time, my dislike grew. Well one day, I realized that I teach other people to have more power over their interactions, so maybe I should put it to the test. (I know, I should have done this a long time ago.) So the next time I interacted with her I looked for something positive about her. I found out that I really respected how well she feeds her children. She feeds them very healthy food and they willing eat it. As I left that interaction, I focused on the positive thing I had found about her and reinforced this new perception as I drove home. Each time I looked for and found more and more things to appreciate about her. Is she ever going to be my favorite person? No. But now I see her differently and in a more balanced and compassionate manner. Just like all of us, she has a combination of good and bad qualities.
The next communication concept I’m going to tell you about is the “halo effect” and the “reverse halo effect.” This is one of my favorites. If you see one positive thing about a person, you will then assume that everything about this person is positive. Or if you see one negative thing about a person, you will then assume that everything about them is negative. We see this with teenagers who begin dating. They will say, “He’s perfect or she’s perfect.” Well, you and I know that nobody’s perfect, but the teenager sees this person with the halo affect and don’t see that the person they are dating are a combination of good and bad qualities. And when we try to tell them differently, they defend that person. They are a victim of the halo effect. The same thing happens when we meet someone from a culture which we don’t like. We use the reverse halo affect and assume that just because they’re from a certain culture, we won’t like them. This is all or nothing thinking and it will get us into trouble. We need to see people as a balance of positive and negative characteristics. Even if there is something you don’t like about a particular culture or religion, it doesn’t have to dictate the whole picture of how you see the individual person. (There are plenty of people I don’t like, but you would never know it as I put aside my opinions and just treat people well.)
One more concept that comes into effect in our daily life is the concept of the “self-fulfilling prophecy”. This is when our negative expectation may lead to us to create that which we didn’t want to occur. Let me give you an example. Every time you go to work, there is a person there that annoys you. (And lots of people annoy me so I can relate.) So when you walk in, you greet everybody warmly but ignore that one person. Or maybe you greet them but choose to greet them in a cold manner. Then you are surprised when the person reacts to you and says, “Have a nice day” with a hostile attitude. This is when most of us will say, “See, look at them they’re always being rude.” But who really started it that day? You did by your attitude and the way you started the interaction. I would challenge you to try another way. The next time you go into work and interact with this person, I would encourage you to greet them warmly with a smile and say something personally kind. This person may be shocked and not know how to react, but over time, they will begin to warm up and your relationship will get better. It may not happen immediately, but if you stick with it, chances are it will get better. Of course it may never be perfect, but I could settle for better. How about you?
One final technique we can use is to realize that things may not always be as they may appear. We may have misunderstood or misperceived the situation. We may be wrong. We need to remember to allow in new information even if it contradicts your stereotype.
In fact, I would encourage you to look for information which breaks your stereotype. Challenge yourself to learn more about the group that you are uncomfortable with or dislike. You may be surprised how much good you can find in them. I would also caution you to be aware of relying on first impressions. Many times we meet people when they are in a crisis or in grief or are overwhelmed by their life. We need to treat them gently, as we would want to be treated if we were in a crisis. An example of this is the patient who comes to the front desk to check in for their appointment and is rude to the receptionist. My first assumption would be that this guy is a jerk. But I know better and don’t jump to that conclusion. (I try not to make assumptions or jump to conclusions because many times I am wrong because I don’t have enough information.) I realize that there might be something going on in his life that I don’t know about. Maybe his wife just died. Maybe he just found out that his son has cancer. Maybe he was just in a car accident. All I know about him is that in spite of his rudeness, he needs my care and support. I also find that when I treat people well and in a caring manner, their rudeness or anger dissipates and interaction goes better. When I treat them better, it gets better. People laugh at me when I say, “Happy Monday” when I come into work or go through the security gate at the airport. But I know that I’m setting a tone and trying to be a positive part of their day. Over time, I have seen offices change their attitude from negativity into optimism, just because I kept saying, “Happy Monday.” Again, I have power over these moments. I can make things better or worse depending on what I bring to the interaction. I have this power and I choose to use it. So can you.
Have a kind and respectful day.
Detailed article describing “The Platinum Rule®”:
What is “The Platinum Rule®” ? Let me tell you how it differs from the Golden Rule. The Golden Rule, which is found in almost every religion says, “Treat people as you would like to be treated or Do unto others as you would like to be done unto.” The Platinum Rule is even better. It says, “Treat people as they would like to be treated or Do unto others as they would like to be done unto.” It is actually a more respectful way of treating people. The Golden Rule assumes that everyone is the same and would want exactly what you would want. But we aren’t alike and we can get into trouble making this assumption. Let me give you an example.
When someone you know has died and people want to give you comfort, “Do you want people to hug you or do you prefer people to not touch you?” Well, I am a hugger so if I use the Golden Rule, then I am going to hug you whether you like it or not. But if I use the Platinum Rule, then I am going to ask you if you could use a hug and depending on what you tell me, I will respect your answer.
The Platinum Rule works really well in America. We are all different. We have different religions, cultures, values and basic preferences. What I personally believe in is respect. Therefore, I will ask how you like to be shown respect and try to honor it. That is why if you tell me you don’t want to have surgery, even though you might die without it, I will respect your answer. I won’t agree with it but it is not my body that has to go through the experience. It is yours. And you are the only one who can say what is right for your life and your body. Now I might ask you if you would consider changing your mind because I don’t want you to die, but ultimately, it is your decision.
I will respect you and I hope that you will consider asking me how I like to be shown respect too.
Have a kind and respectful day.
The Platinum Rule® is a registered trademark of Dr. Tony Alessandra. Used with permission. All other rights are reserved in all media.
“Cutural Communication Strategies”, “Communicating with Dying” and “Insiders Guide to filling out your Advance Directive” Newsletters are Available.
If you missed the last newsletters, “Cultural Communication Strategies”, “Communicating with the Dying” or the “Insider’s Guide to Filling Out Your Advance Directive”, you can still get them if you sign up under the receive newsletters section on the lower right side of the blog. When you sign up you will get the bonus office visit toolkit as well as the back issues of the newsletters. I usually send out one newsletter every month so you won’t be inundated with emails. And of course I respect your privacy and won’t release your information to anyone else.
Have a kind and respectful day.
The Human Side of Healthcare Ethics
Volume 1, April 2009
Quote of the Day:
“Everyone has an expiration date stamped on their butts. We
just can’t read the date.” -Viki Kind
Communicating with the Dying
There are many layers to communicating with the dying. It depends
on who the person is, how they are dealing with their own dying
process, your relationship with them and so many other things. So,
what I am about to tell you works with some and not with others.
Or one communication strategy will be appropriate but the other
parts won’t fit. I trust you will know what to do as you help the
individual in front of you.
I didn’t know all of this myself until about 5 years ago when I
became a hospice volunteer. I had aging relatives that I was
responsible for and I felt helpless when it came to dealing with
their deaths. So I went through an extensive training and have
been learning ever since. I am here to share what I have learned.
The first section addresses the months before death and the last
section addresses the last days and hours of death. Both are
The Early Days of the Dying Experience
People want a safe person to talk to and perhaps you can be that
person for them. You will be giving the gift of conversation to
your friend, your loved one or someone you are working with in your
professional life. As a side note, one thing I struggle with is
when someone doesn’t want to talk. I have to remind myself that
this is this person’s journey, not mine. I am only there to
support them. I tell them that I would be glad to talk to them
about their fears, concerns or hopes for how their death might go.
But I accept when they say, “No thank you.” Maybe they will be
ready another time or maybe I am not the right person for them and
they would prefer to talk to someone else. I don’t take it
personally. I stay present and meet them where they are
Again, everyone is unique. These are just some of the issues
people would like to talk to someone about:
-To know the diagnosis, prognosis and to choose the type of care
-To be treated as a person and not a disease
-To be in an environment of their choosing
-To talk about their fears of abandonment, pain, physical
deterioration and increasing dependence
-To be able to have their family feel they can get along without them
-To have their moods understood and accepted without judgment, such as anger, despair, guilt, denial, resistance or sorrow
-To feel that dying is a natural process and it’s okay to let go
-To be able to communicate honestly with family members regarding their feelings and needs
-To be as pain-free and alert as possible
-To find meaning in their lives, in their suffering and in their death
-To experience their remaining days with awareness and appreciation for life
-To have the respect and love of those who care for them
-To be able to remain in as much control as they are able
-To be able to complete unfinished business
-To be given a sense of purpose in the days remaining
This last one is very important. The other day someone was telling
me about their dad’s failing health. The father was still
completely competent but the daughter had taken over her dad’s
life. Her dad had lost his voice in his own life. And everyone in
the family started to over-protect him. The grandkids would come
over and they would say, “Shush, don’t bother your grandfather.”
This was a grandfather that loved his grandkids and loved
interacting with them. He could still be the grandfather. He
could still matter in their lives. He wasn’t dead yet. Instead I
told her to do her best to keep him included and to let him know
that he matters.
When people are dying, one of the most profound
questions they want answered is, “Did I matter.” Make sure you
tell them not only that they matter but why they have mattered.
Tell them what you have learned from them and how they have changed
your life. Now I realize that sometimes things do need to change
as the person becomes weaker but try to keep the person connected
and valued in the family. I know when my aunt was dying; people
would still come to her room and ask her for advice. She still
mattered. I think this is one of the reasons she held on for so
long. Her work wasn’t done. So, please help the person have their
dignity and value until the end.
The Last Days of the Dying Experience
When people are getting very close to death, maybe during the last
few days or hours, their body begins to change. Because they are
probably no longer eating or drinking, their electrolytes get out
of balance which affects the brain. (The electrolytes work as a
balancing system keeping all of the chemicals in our body in
working balance. Without the proper balance, our brain function is
affected.) Strange things may begin to happen but you don’t need
to be afraid. These signs are normal and natural and I find rather
intriguing. For instance, the person may begin to speak of being
in the presence of those who have already died. This frightens
many families and some people argue with the dying and tell them
that they are wrong or just confused. Why do we need to argue with
them? They are dying! Instead, ask them questions. Who do you
see? What do you see? Tell me about it.
I expected my father to see his mama and papa who he missed dearly and adored.
But he started talking to the empty space right next to meet and kept
saying, “Martin.” I asked him, “Mama?” But he said no, “Martin.”
Then it hit me. His best friend in his childhood and early
adulthood was Martin. His dearest friend had come to guide him on
his journey. Now some people say it is just the electrolytes
affecting the brain and triggering old memories. Others say that
it is truly a guide coming to escort the person to heaven. I don’t
know which one is true but I have been privileged to witness this
part of the journey.
Another thing that happens is that the dying will speak of
preparing to travel or to change. My dad did this. He kept
saying, “The train is late, I have to get on the train.” This is a
common one I have seen many times. Sometimes it is a bus or a
plane or other. But it is a message which tells the loved ones
that the time is getting closer. Other people talk of seeing a
place. Again, ask them about it. Reassure them if they are
confused or frightened. Let them know that they are safe and
whatever they are seeing is okay. Another interesting thing is
that many people will know the time of their death or will keep
asking what time it is. As you begin to leave and you say, “See
you tomorrow.” The dying person might tell you, “No you won’t.”
Sometimes it is absolutely true and sometimes it is wishful
thinking as the person is ready for their journey. The main thing
to remember is that the confusion of the dying is normal. They are
disconnecting from this world and letting go of what has held them
here. There mind is now somewhere else. And this is okay. Again,
don’t argue or judge or discount their experience. Enjoy the ride
One thing that happens sometimes a few days or a few hours before
death is that the person may have a sudden burst of energy. This
is a gift. For some reason, many people who have been sleeping all
of the time, suddenly wake up and start talking again. This can be
very confusing for their loved ones. They believe that a miracle
is happening and that the person is going to get better. What they
don’t realize is that what is really happening is that death is
even closer. My friend, Amber, told me about her dying horse. Her
beloved horse was dying. He couldn’t leave the stall or walk
anymore. The day before he died, he got this sudden burst of
energy and went out and played with the other horses for a few
hours. The vet had warned her about this phenomenon so she looked
at it as a gift. Her horse had one more bright moment in his life.
And then, hours later, he died a good death. So, enjoy the moment
if you are lucky to get it. If someone comes back to you for a few
minutes or hours, remember it is not going to last forever. Say
anything else you need to say and be grateful you got the chance.
Near the very end, the person will become very unresponsive. That
doesn’t mean that they can’t still hear you or feel your touch.
Talk to them as if they are still with you. Be cautious about
talking about things you wouldn’t usually say in front of them. I
have witnessed families saying in the room, “So what does the will
say?” while the person is still alive. One of the best ways to
communicate with the dying is by touch. Put some lotion on their
hands or their feet and give them a massage. Climb into bed and
take them into your arms. Think about how you would comfort a
child. You would stroke their head, cuddle with them and make them
“feel” loved. As death approaches, tell them you loved them and
that it is okay for them to go. People will hold on for a long
time waiting to hear these words. They want you to say, “I will
miss you but I will be okay. The family will be okay. You taught
me what I need to know so I will be okay. We will take care of
each other.” Or any words like that.
Also, remember that some people need to die alone to protect their
loved ones. Over and over again, nurses will tell me of a spouse
who sits vigil day after day. They never leave to bathe or to eat.
And finally after days of waiting, the spouse gives in and says,
“I am just going to run and get a cup of coffee in the cafeteria.”
And as soon as the person leaves, the patient dies. The spouse
comes back and is devastated that they weren’t there and that they
missed it. I know people that have been shattered by this
experience. But what they didn’t know is that their loved one was
protecting them and didn’t want to put them through witnessing
their death. It wasn’t that the spouse didn’t matter; it was that
the spouse mattered too much. With my dad, he kept holding on for
days and days. Finally I said to him, “I know you need to do this
alone. I am going to go now dad. I love you and I know you won’t
be here when I get back. Goodbye.” I went outside and 20 minutes
later he was gone.” I was glad he was able to let go and do it his
way. People do have to die on their own terms. We can’t control
the process. Even when people are really out of it, they still
seem to die their own way. At the opposite end of the spectrum,
many people can’t let go until either a person or certain people
have arrived. My recent hospice patient was like that. I was
surprised he was still there when I visited him. He had every
physical symptom of impending death but he was still holding on. I
realized his brother was due in about 3 hours and then I
understood. He held on for the brother’s visit and then he died
Ultimately, you just don’t know. You don’t know what your loved
one will need until you are in the moment. Whatever happens is
okay. And you don’t have to be perfect. Just be present and
loving. I always feel so honored to be a part of a person’s dying
process, whether I get to be present in the early days as they are
coming to terms with their approaching death or in the last moments
of the person’s life. It is an incredibly intimate experience and
one that I have been privileged to be a part of. I hope you can
find the beauty and profound nature of the experience as well. If
you have other questions, feel free to contact me at
Elizabeth P from New Jersey
“Viki helped me in my crisis. There was no wait, no down time, and
she knew her stuff!”