The Power of Empathy - Helping people connect to their own hearts

Quote of the month:
“The great gift of human beings is that we have the power of empathy.” Meryl Streep

Empathy

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

Interview with Carol Bursack, author of “Minding Our Elders”, on Jan. 12, 9AM pacific

Listen to interview on Jan. 12th, 9AM pacific on blogtalkradio.com/kindethics.com or listen live at 347-945-5152.

For over twenty years author, columnist and speaker Carol Bradley Bursack cared for a neighbor and six elderly family members. As a result of this experience, Bursack wrote Minding Our Elders: Caregivers Share Their Personal Stories, a portable support group for caregivers. Minding Our Elders is used as a college text for gerontology and nursing home administration classes as a way to humanize, for students, the family caregiving experience. Bursack’s award-winning Websites, www.mindingourelders.com and www.mindingoureldersblogs.com include links to helpful agencies, articles rich with information and comfort, links to chat groups, and resources for caregiver, boomer and senior needs.

Bursack’s elder care newspaper column, “Minding Our Elders,” runs weekly, in print and on-line. She is Editor-in-Chief of ElderCarelink.com. She’s an expert blogger and community leader on OurAlzheimers.com and the forum moderator and a regular contributor to AgingCare.com.

Bursack has been interviewed on many national radio shows, including “Mr. Eldercare,” “Today’s Author,” “The Ron Ross Show,” and Kevin Skipper’s “The Parent Care Show.” She has been interviewed and quoted in magazines and newspapers around the world, including Family Circle, Quick and Simple, North Jersey Media Group, The Leader-Telegram, Tampa Tribune and the Sydney Morning Herald. She also speaks on caregiving issues to groups of all sizes.

Bursack is a member of AARP, CAPS (Children of Aging Parents), the National Caregivers Advisory Panel, the National Family Caregivers Association (NFCA) and the National Council of Hospice and Palliative Professionals (NCHPP). As an expert in her field, she is featured in Montclair’s Who’s Who in Heath and has written hundreds of articles for national publications. Bursack is also a contributing author to “The Media Librarian’s Handbook,” (Facet Publishing, UK 2008) and contributing Author to: “Dementia: Frank and Linda’s story: New approaches, new understanding, new hope.” (Lion-Monarch, March 2010).

Mindingourelders.com

Have a kind and respectful day.

Taking Action to Solve the Healthcare Conflict

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.

Cultural Communication Strategies, KindEthics Newsletter vol. 2

Quote of the Day:

Arguing is really saying, “If you were more like me, then I could like you better.”

Feature Article:

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.

KindEthics Newsletter April 2009: Communicating with the Dying

KindEthics Newsletter
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

Feature Article:

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
profoundly important.

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
emotionally.

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
with them.

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
peacefully.

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
viki@kindethics.com.

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