While it’s very important to create advance directives, its equally important to make sure they’re available when they’re needed. You wouldn’t believe how many times doctors are told, “I know my mom has a healthcare directive but I don’t know where she keeps it.” Without access to your documents, how will the healthcare team know what you want?
DocuBank is a service that makes sure a person’s advance directives and emergency information are immediately available 24 hours a day, worldwide by fax or the Internet. Each member receives a plastic wallet card, and then they, their family, or hospitals can use that card to obtain their important documents. http://www.docubank.com/
Have a kind and respectful day.
An article from Hayes Rowan about improving the nursing homes.
Reclaiming Our Heritage
In his quixotic campaign to save Cleveland’s John Marshall High School from demolition, a dedicated soul (forgive me please for mentioning him) declaimed “The right of the community to hold onto its heritage is a basic one.”
Landmark buildings are good. Our greatest legacy though is in the nursing homes (or hopefully in their own homes) – our elders, who taught us to tie our shoes, cheered us when we sang the blues, made us breakfast lunch and dinner years through and through; who know us often better than we know ourselves, and that’s true.
There are many ways of turning the nursing homes, our living heritage, into centers of civic activity – meeting places for block clubs, scout troops, library reading circles, leagues of women voters.
For that heritage, and our right to hold onto it, is imperiled.
A few years ago, Clevelander Steve Piskor had to put a video camera in his mother’s room at our county’s nursing home to uncover the abuses she was enduring.() Raised her son right, and lucky she did.
A study in an Atlanta GA nursing home, cited in the June ’06 Ladies Home Journal, found nearly half the residents had been punched, kicked, or choked.
We can and really must build new bridges between nursing homes and neighborhoods – bring movies in to enjoy with the residents; hold sewing bees with them, helping them mend their favorite clothes. Create indoor gardens, and outdoor. Those of you with affectionate dogs – a great opportunity for truly meaningful engagement with your community.
Attention: families who protest abuses often find themselves barred from even visiting their loved ones. Patricia McGinnis, California Advocates for Nursing Home Reform: “We’re seeing more retaliation like this than ever before against families who try to protect their parents.”
For some long-term residents – especially those without strong family ties – it can be a form of imprisonment, as Mike Bright told a Texas jury recently. Walk some halls and you will see the truth of his words.
MacArthur Fellow Marie Connolly says abused elders receive little or no protection from any system or agency. It may be one reason she resigned from justice department, DOJ.
Many of you know the poster in the 2nd Police District lobby, circulated years ago by our county’s Adult Protective Services. It portrays the photograph of an elderly woman in a picture frame; the glass is shattered.
The caption proclaims: “THE ABUSE NO ONE TALKS ABOUT”.
What to do? Jesus told us, “Visit the sick.”
Your mission … should you choose to accept.
Improving Our Nursing Homes
Published in Acorn Press, Ridgefield, CT.
I have been sending out Kindness Reminders to many people who want to make sure that they reach out to show their love to a person who lives far away, a senior in a care community, or someone who just needs a little tender, loving care. If you would like to sign up for these reminders, sign up at the top right of my blog at www.KindEthics.com .
I was pleased that Hayes Rowan wrote to me with a wonderful idea for how we can show love and comfort to those who might need a little support. Here is what he wrote:
Here is one way to build bridges between our neighborhoods & nursing homes, & improve the quality of lives in both. More than pillows, the hope is: with more neighbors interacting with residents – the more conditions in the homes will improve.
Here goes: Enlist folks (scout troops, church groups, librarians adept with needlepoint hoops) to have sewing bees with residents, and make pillows. Old fashioned sewing bees – a time to listen, a time to care, someday, somewhere.
Pillows have that way of easing the aches & pains of immobility – lumbar pillows, neck pillows, u-shaped seat-cushion pillows. These days I always use a special one, globe-shaped and loosely filled, to cradle a book or support a sewing project – eases strain all around. (Bought it second-hand for a dollar – that works too.) (I use, to count ‘em, seven pillows* for the better night’s rest, as the hips & back & mood can attest. They sure beat sleepin’ pills, that leave one all groggy & soggy the next day, (Calms Forte the most notable exception.)
So: sewing bees in the nursing home dining rooms, fortnightly – what say?
(*best fabrics for cases are satiny-silky-poly to touch. The more frictive type (flannel, corduroy ..) resist adjustment under blankets’ weight.)
Do let us know if some of you miraculously bring this from Idea to Actuality and write to firstname.lastname@example.org
Have a kind and respectful day.
Over and over again, I’ve sat in rooms with 30 doctors, and I’ve asked the question, “How many of you refer patients to hospice? Early or late? Out of the 30 doctors perhaps five will raise their hand And usually the referral is made very close to the patient’s death. This is terrible. Patients and their loved ones are being denied a wonderful option that doesn’t cost them anything. That option is hospice.
Here are some of the things I teach doctors about referring to hospice. A hospice referral is similar to a referral to any other specialist. You are still their primary doctor. Hospice care does not mean that the patient can never return to the office or hospital for care. It just means that the focus of care is now on comfort, support and symptom management. The patient still needs you even though you are no longer able to heal their disease. You can however, heal their suffering. You can make sure they’re getting good pain management, good symptom control and help them have a profound and meaningful death. Hospice is a wonderful tool to help your patient in their journey.
Hospice is a team of people that help meet the patient’s and family’s physical, psychological, social and spiritual needs. Hospice provides TLC and support for the patient/family. In fact, hospice works so well that 13% of patients on hospice, will recover and be able to come off of hospice. No matter, being on hospice will increase both the quality and quantity of the person’s remaining days. Wouldn’t you want to live longer and better, even if your days were numbered? I would and I would want that for my loved ones as well.
The referral to the hospice team can be done at any time. Sooner is better than later. Not only is it better for the patient, but researchers found that if elderly spouse of the patient has the support of hospice for their loved one, they probably will not die within the next year after the death. The hospice referral will not only help somebody have a good death, but may end up saving another life.
Have a kind and respectful day.
Coda Alliance presents the ‘Go Wish Game’. It gives you an easy, entertaining way to think and talk about what’s important to you if you become seriously ill. The starter game comes with two packs of cards in contrasting colors and instructions for using the cards individually or in pairs.
For more information about the game, and to play on-line, visit www.gowish.org.
Reach And Teach Says:
“A woman at church came up to us and thanked us for having introduced her to Go Wish. She had given her mother a deck of Go Wish cards and had gone through the deck once with her mom. A month later, her mom had fallen into a coma, and her children were facing very difficult decisions about her care. They disagreed with each other and there was a lot of tension. One of the children had to go to the mother’s home to get something and found the sorted Go Wish card deck and detailed notes the mother had written about her top ten wishes. It was clear what their mother wanted, and the children were relieved to be able to follow her wishes, clearly documented, rather than having to argue with each other about what they each thought their mother might want.”
We feel very lucky that our paths crossed with the amazing people at the Coda Alliance. Having seen what we had done with Teaching Economics As If People Mattered, CIVIO, MicahsCall.org, Tikkun/NSP, and other online projects, the Coda Alliiance asked us if we could help create an online version of Go Wish. We feel that having your desires known and followed, especially when you can not speak for yourself, is a key social justice issue.
Go Wish helps you figure out what’s most important to you and allows you to have discussions about your wishes with people who may someday have to speak for you. If you are a caregiver, or may find yourself in that position, Go Wish is also a very good way for you to learn, ahead of time, what the person you may be caring for wishes. We’ve found the cards incredibly helpful in our own lives as we work with our own aging parents, and when we have shared them with others they have had significant impact.
We’re grateful to have the Coda Alliance as one of our 10/10 partners, helping to make the Go Wish card decks more easily available across the country.
Your Order Includes: You get 2 decks (two different colors) for $22.00 (which includes shipping within the United States – for international orders, please select “International Shipping” from the pull-down menu and we will add $10 to cover the additional postage).
Bulk Orders: Card packs may also be purchased in bulk in quantities up to 64 packs total. Use the pull-down menu to select bulk order quantities. Prices include shipping and handling.
If you’d like to order larger quantities, please call us at 1-888-PEACE-40.
Order Directly from the Coda Alliance:
You can also order decks directly from the Coda Alliance. They have special pricing for very large bulk orders.
Have a kind and respectful day.
When you find yourself in a conflict with the patient, one of the best techniques you can use 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 hasn’t been taking their medication. Usually we would say, “Why haven’t you been taking your medication?” And what we really mean 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 person 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 understand what is the real issue. Are they not taking their medicine is because they can’t afford them? Are they not taking their medicine because they don’t like the way it makes them feel? Or are they not able to cut the pill in half or open the medicine bottle? These are just a few examples of the many reasons people might not be taking their medications. Figure out what the real issue is and you’ll be able to solve the problem together.
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.
Who should make the decisions when this person can’t? The answer to this question could be any one of the following:
Person specified on the Advance Directive
Conservator or guardian
Adult child of patient
Administrator of the nursing home (in some states)
While this is a general list, the answer really depends on where you live, what the patient has specified and if the court has gotten involved. Each state calls the decision maker by a different name: surrogate decision maker, agent, proxy or durable power of attorney for healthcare. The laws that determine who should make the decisions also change state by state. For example, the administrator of a nursing home may be allowed to make the decisions in one state, but can’t in a different state.
Another rule that varies is the law that dictates a specific hierarchy of decision makers. A hierarchy means there is a legal order to who will be allowed to make the decisions for someone who has lost capacity. You may need to ask the social worker, the bioethics committee or the legal department at the hospital to help you figure out the appropriate laws in your state.
Here are some tips to consider when choosing your decision maker.
1. Pick someone who will understand what the doctor is saying.
2. Pick someone who knows you well and has listened to what you want.
3. Pick someone who won’t fall apart in a crisis.
4. Pick someone who will do what you have asked, even if it difficult to do.
5. Pick someone who is close by geographically.
6. Write down whom you don’t want to be involved in the decision making.
7. You can pick two or three people to work together as your decision makers.
8. Your spouse, significant other or partner may not be your best choice, and you may want to choose someone else.
9. In the “Other” section of the form, state whom you do and don’t want to be told your medical information.
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.
So many people ask me what they should be thinking about when making medical decisions. Whether you are making your own decisions or having to make decisions for others, there is a lot to think about.
Your doctor or your loved one’s doctor will talk to you about the medical aspects of any health-related decision. But that doesn’t mean that you are limited to thinking only about medicine. It may be important to consider the financial costs associated with the treatment plan, if the patient’s religion should play a role in the decision and whether there are cultural issues that come into play. Think about the overall picture of your loved one’s life. In The Caregiver’s Path to Compassionate Decision Making, I offer lists of questions to help you understand the whole picture.
It would be nice for the decision to be as simple as asking, “Will the treatment work and what are the side effects?” But life isn’t that simple. What if you were about to make a medical decision that allowed something to be done to the person’s body that was forbidden by the person’s culture or religion? You might have chosen a certain treatment to save her life, but because the patient received that treatment, she will no longer be able to move on to the hereafter. Yes, the medical decision was a good one, but how the decision will affect the person’s life, based on her personal belief system, was not.
If the person you are making decisions for is very religious, then it would be good to find out if there are any religious rules or values that you should consider in your decision making. I know that when I work with my hospice patients, it is important to know if there are certain rites or blessings that have to be performed before the patient’s death. I don’t have to agree with what the person wants, but if I am the caregiver, then I need to do what I can to make sure the person’s religion or culture is respected. I will need to call in the appropriate religious leader to take care of the spiritual needs of this person. If the person is not religious or spiritual, then you will need to respect this and leave religion out of the decision making process.
For most people, the financial costs of the medical treatment will need to be considered or you may be putting the person in financial danger. You may be in charge of making only the healthcare decisions, but you should make sure that you or somebody else checks with the insurance company to find out whether or not it will pay for the treatment and to get the proper authorizations. Don’t let a simple mistake like forgetting to call the insurance company to let them know that your loved one was admitted to the hospital put your loved one in financial distress. Making decisions without using the financial questions could bankrupt your loved one. Our goal of protecting the person should include protecting his or her wallet.
For a list of questions you can use when making decisions, go to the resource page and download the list from the excerpts from The Caregiver’s Path to Compassionate Decision Making – Making Choices for Those Who Can’t.
Have a kind and respectful day.