Facing the End of Life

Last Editorial Review: 7/13/2005

WebMD Live Events Transcript

Recent events have again shown us how important it is to have open, honest discussions with our loved ones about the end of life. But how do we begin? What are the issues we must deal with and how can we best address them? Laura Larsen, RN, author of "Facing the Final Mystery: A Guide to Discussing End-of-Life Issues," was our guest on June 29, 2005.

The opinions expressed herein are the guests' alone and have not been reviewed by a WebMD physician. If you have questions about your health, you should consult your personal physician. This event is meant for informational purposes only.

Welcome to WebMD Live, Laura. Thank you for joining us today. Are most people reluctant to emotionally admit that there is an end to life?

Yes. It is one of the most difficult subjects to discuss with those we love. There are many reasons behind this, but the fact is, this is a very, very difficult topic. That is why I wrote the book.

So given that, how do we begin conversations with those we love about the end of life?

I have found there is usually one person in the family system that becomes interested in speaking about end-of-life issues. That doesn't include all families for sure. But let's go to where the conversations at least have a possibility of taking place, which means somebody will instigate it.

What I like to suggest is that this person keep the conversation about themselves. That is, they might say for example, "Mom, Dad, I need to know these things about your end-of-life decision. It makes me anxious to not know what you think or want or need in just the practical terms, let alone how you're feeling about these issues." That way, the person is less likely to be defensive.

You may have to do that a couple of times, with different reasons, but always keeping it from your point of view, the person willing and interested in having these conversations.

"When these conversations have not taken place and the dying process begins, especially if the dying person cannot speak, it becomes much more difficult. Problems will ensue, as if it isn't difficult enough to lose somebody that you love."

Does it help to express our own wishes about our end-of-life choices?

That is an excellent way to begin a conversation. For example, if somebody received a diagnosis that is serious, they can approach other family members and say something like, "Look, I'm going to do everything I can to make myself get better, but in the meantime I want you to know in case I come to some place where I can't speak for myself, I want you to know what my wishes are." Sometimes the other family members don't even think about that and will tell you that you're going to be just fine. This person may say again, in a slightly different way, "I intend to be, but this is serious, so here's what I want. I want this person in our family to speak for me if I cannot speak and I want to be cremated, not buried." Whatever the issues are that are the top ones. Once you do have an audience, you can say, "While we're at it, I would really like to know what your feelings are about your end-of-life wishes.

The discrepancies come in all pairings of family members. Sometimes it's the parents who either because of an illness or advancing age will want to talk to their grown children. Sometimes it's the grown children who see their elderly parents starting to decline, they can see the writing on the wall and they need more information. Usually the most difficult are the spouses. For example, the husband does not want to talk about these things, so the wife has to get a support team. Maybe she needs to start with her children, her sister or parents, but she needs to get a support system.

When these conversations have not taken place and the dying process begins, especially if the dying person cannot speak, it becomes much more difficult. Problems will ensue, as if it isn't difficult enough to lose somebody that you love.

Recently my mother passed away and I was shocked to discover she and my dad never discussed DNR situations. They discussed everything else including her funeral. How can I start that conversation with my Dad?

There's a document called, for short, DNR. It stands for "do not resuscitate."

If somebody's heart or breathing has stopped, or both simultaneously, we now have the medical technology to revive the patient. We can get the heart started again, either physically with thumping on the chest or medication that is injected in the heart and we have means to get them breathing again. Taking these actions has become an enormous choice we may have to make. In real life it doesn't happen that often -- most people do get to die in a pretty peaceful manner. However, because of the opportunities we now have, we must discuss them with all the people we care about.

I would say, in relationship to your father, one thing you can start with is exactly what you already expressed by saying, "Wow, you wouldn't have known whether mom would have wanted to be resuscitated or not, so I now want to know about you. Tell me and then let's write this down."

Wouldn't a living will cover this?

Let me first tell you what a living will is. It's actually not the proper term anymore to use for these end-of-life choices. A true living will allows you to describe what you want or don't want to happen to you medically and also includes practical things about your funeral, body disposition and such. What the living will does not do, and this is very important, is to allow you to appoint an agent, sometimes called a health care proxy, to speak for you if you cannot speak on your own.

The name of the document that is the closest to what we need to make is called an advanced directive for health care. The "living will" term gets used in the news much more often than the term "advanced directive," but in fact the living will does not allow you to appoint someone to speak for you. Having an agent to speak for you is extremely important as there is truly no way that you can write down every possible thing that might happen to you if you are unable to speak about it.

Once again, most people can speak for themselves until the end, and at the same time, we've got that medical technology there, the belief in our society, particularly in America, that length of life is more important than quality of life. In addition, our medical profession is trained to save lives. That can often mean one more procedure, one more treatment, one more test -- all of which can cause more suffering for the patient. There may be times when a terrific outcome happens, and that's where the crux of the problem lies -- we don't know. That is truly why these conversations are so important.

It's very important to write down in these documents what our wishes are, but it is more important to discuss our wishes with the people we love -- especially in front of each other. For instance, if I wanted no heroic measures taken for me, which could include being resuscitated or possibly going on dialysis if my kidneys were to fail -- there are many ways to keep one alive longer and I couldn't write all those down. I couldn't know what all the possibilities would be, but I could speak to someone I really trusted and let them understand my philosophy of my own life and tell them if I do or do not want to live under these kinds of circumstances. The importance of having this witnessed, especially in a family where there is discord, is probably one of the most important things I could do.

So it's very important to write down your wishes, it's important to appoint an agent to speak for you and have it written down, but it's equally important to talk about these things in the way you talk about any other plans you make for your future. Imagine planning a wedding, a bar mitzvah or a graduation party and you did not make a list of the guests, determine what kind of food you would serve or prepare the speeches you might make. It's not likely to be a good party, right? And yet this enormous event, the only celebratory event after birth that we will all experience -- nobody wants to plan for.

"I cannot say enough about the importance of having family conversations over and above having the written documents."

I think your point about talking with family members in front of each other is quite important. If only one member knows your wishes, they may have difficulty seeing that your wishes are carried out.

That's exactly my point, especially when things happen fast. Sometimes we have the privilege of having warning signs about our impending death or that of a loved one, and then there can be some conversations taking place, but other times things happen quickly.

I had a dear friend who received a very, very serious cancer diagnosis a year ago. She went through all the medical treatments offered her, which were many and debilitating, but she was determined to get well. Her family of course was very supportive of her doing this. However, because they wanted her to get well nobody talked about anything in the realm of her possibly dying. Even in the last several months as she was definitely going downhill, they still would not talk about this. They still wanted to know what the next thing to do was: Call the doctor? What can we do about this symptom? What can we do about that symptom? Suddenly she collapsed, and because no conversations had taken place she was attached to a ventilator, which started breathing for her, and she had to be medicated to an extent she could not communicate with her family. Her grown daughters were so shocked that this could be happening that they wanted her to be treated in whatever way possible so they could talk to her. A number of things were instigated that prolonged my friend's life and in fact, the good news was, there was a slight amount of communication at the end. But, I will never know the extent of the physical suffering of my friend that may have taken place only because the conversations had not taken place before this collapse. The family had created advanced directives with an attorney and they were in a file drawer somewhere, but nobody got them out and looked at them. In fact, it was the day before she died that they discussed what they would do with her body because nobody had ever talked about that either. I also think that the deep need for these grown children to speak to their mother was because they hadn't spoken about these things before, so they needed to know what she thought -- did she want the treatments?

I cannot say enough about the importance of having family conversations over and above having the written documents. Even though this family loved each other very much and there was no discord, there were still very different opinions about what should be done, so there became a lot of discord because the conversation had not taken place.

What about a power of attorney?

It's a confusing phrase because there are two documents that are very different.

The plain power of attorney is a financial document. It allows the person you choose to make financial decisions for you, such as writing your checks and paying your bills, accessing your bank accounts and so forth.

Unfortunately, they stared using the phrase "power of attorney" for health care, which is the document through which you name an agent to make your decisions. I say unfortunately because it's confusing to have two documents that sound similar but are not. While the power of attorney for health care has the words "health care" in it, the other just says power of attorney, so people could actually think they have the power of attorney for health care even if they have only created the plain power of attorney for financial issues.

I think by the end of the year there may be a national phrase for the advanced directive that everyone can agree on and can therefore communicate in a better fashion. We now have living will, power of attorney for health care and advanced directive for health care -- they're all a little different and some are nearly the same with different titles. It's being worked on around the country. We also have different states with different titles.

Again, it's the conversations amongst the family members that will make the documents the most useful.

"With a situation where one person's belief systems are very different from her immediate family, she may need to reach outside the family and she may end up choosing to make a friend or a pair of friends as her agents to make her decisions."

How should a family deal with respecting the wishes of a family member if they really disagree with them?

Great question. With a situation where one person's belief systems are very different from her immediate family, she may need to reach outside the family and she may end up choosing to make a friend or a pair of friends as her agents to make her decisions. If such is the case, it is really, really important that the conversation happen with all the family members present, as well as the friends who have been chosen to speak for the person who has her own specific wishes, so that when a situation arises there can be support.

An example of something like this could be a person who has endured a lot of physical problems their whole life, perhaps not life threatening, but very uncomfortable and debilitating throughout decades. This person may have extra strong feelings that if something comes along like cancer or kidney dialysis, they may be very clear they do not want dramatic procedures done that will lead to even more years of physical suffering. If the other family members have not experienced this kind of discomfort, it's true that they may not be able to understand why their loved one would be willing to forego, let's say, heart bypass surgery at age 70 that might cause her to die in a fairly short time. While the family is thinking that the surgery will make her live longer, she is thinking that she doesn't want to go through the surgery, the pain and the recuperation, only to continue living with arthritic pain, sleeplessness and the chronic of whatever may be going on. That may be where there's a different point of view than the rest of the family.

There could also be conversations with a person such as with her doctor, her clergy person if she has one or other spiritual mentor to give her more support when the family is in disagreement.

Such a situation could also happen where we have the person who has very specific desires or wishes and maybe one family member is supportive but the other four are not. This again could be a time to get outside support in the form of friends, clergy or medical opinion to form a bigger support team. This could also happen in religious situations, where one person could have a different religion than the rest or go outside the religious doctrine the family believes important to follow.

There's nothing wrong with going outside your family. In fact, there are many times when the closest family member would not be the person you would choose to be your agent, even though it seems like the likely person, like your spouse or sister. Most often these people would be a good choice, but there are occasions when they would not be, and it's very important to know you would have support from someone else during this time if you cannot speak.

Remember, all these issues only come about if one cannot speak for themselves. In most cases we're doing a good job of preparing and we will be able to speak toward the end of our lives.

My husband simply doesn't talk about living wills and dying, saying I have nothing to worry about. Yet, I have a disease that could take my life one day. How can I get him to open up about this?

Great question and a very common question. I would begin, as I said at the beginning, by being descriptive about what you see as the possible scenarios that could happen. If he will not talk with you about it, and this is so common and tragic, then you can begin by saying, "You keep telling me everything will be fine and I hope it will be, but here's the things I worry about: I worry I won't be able to take care of myself and if something happens to you, you won't be able to take care of me either. So I want to begin discussing these things and writing them down."

Now, if the husband remains recalcitrant, I believe it is extremely important for the wife to go outside their bond. This woman for example, has really strong feelings, fears, and concerns about the outcome of her condition and it would be very valuable for her to begin speaking about this with someone outside of her husband -- possibly her children, sister, a good friend or even a neighbor. Often a neighbor becomes a witness to an end-of-life situation, just out of geography. People think of neighbors as not family, yet it's highly likely that a neighbor will be more closely involved in a situation than the grown children who may live in other states, and so a neighbor is not a bad idea to start having this conversation with, especially if this woman is not making progress with the husband who keeps saying everything is going to be fine. She can say to her husband, "I hope it will be fine, but if you are not willing to talk to me about this, I'm going to talk about it elsewhere until I feel secure I will get help."

Once again, hold your own place in the conversation. Don't make the other person feel wrong, don't attack or demand -- but communicate your wishes, fears and desires for an outcome. Then set out to see that it might be met in the best way possible, even if it's outside the immediate family.

When is it appropriate to talk about end-of-life issues with a child?

Well, that depends on the situation. I think there are many opportunities from dead canaries and goldfish to grandparents dying. These can be wonderful doorways to teaching a child and helping with the understanding that this is a thing that happens to all of us. Yes, it's sad, we miss the dog. Yes, it's sad, we won't see grandpa again, but this is the way it goes. The more a child is involved in this, the less he or she will end up in these fear-based impressions of death that our culture now lives in.

One of the reasons we have come to this place is that death has been taken out of the household for the most part. Our grandpa doesn't die at home in the way that he once did. I think 78% or so of people die in hospitals or nursing homes, whereas in the olden days children witnessed the death of their parents and they may have also lived on farms where they saw the life-and-death cycles of animals. Given the circumstances of where we are today, there are still opportunities to honor death in a celebratory way, whether it's with a grandparent or a family pet. I have seen my own grandson lose four great-grandparents and big animals on their ranch. My children have always included him in the process of the death and removal of the body in the case of the animals, and I have a feeling he's going to be much healthier about death as an adult because he has not been shielded from it.

I meet many people of advanced middle age who have never seen a dead body, even though their own parents have died. That contributes to pushing away from it and pushing away from any conversation because it's an unknown. Loved ones get ill, go off to the hospital, get the tubes in them, they can't talk and pretty soon the visits stop because not much is happening. They die, the hospital calls the mortuary, the mortuary takes the body to the crematorium, and that's it -- there's no involvement, so then it becomes more fearful.

"You're bringing it full circle, life and death, and it brings us closer to each other instead of separating us from each other, which is what happens when we tell each other lies about what's going on. Speaking about death enhances our life."

How can hospice help at the end of life? How is the decision made to have hospice care workers come to the home or to enter a hospice facility?

Hospice is a fabulous service we have in our country. It's basically available to everyone, Medicare pays for it and most insurance pays for it.

Hospice care can help a family go through all the things we have talked about with much greater ease. They provide pain relief and comfort care. They can bring equipment into the home, such as a hospital bed and equipment to make using the toilet or the bathtub easier.

Once again, because of the fear of death we have in this country, hospice gets used very little. In fact, the average hospice use is about 25 days, which means most people don't use it at all or for two days while they could have had it for six months or longer if needed. One of the difficulties is the word "hospice" means to many people that death is imminent and they don't want to go there. In fact, hospice has been known to provide such good care people actually do get well and fire the hospice caregivers until they're needed again. Yet so many families miss out on this wonderful service because they believe it's only useful the last couple days of life.

The way we get hospice care is through conversation with a doctor who's caring for the patient. A prescription is written that is given to the hospice organization and they will send out a nurse and/or a social worker to interview the family to determine if it's time that hospice would be of benefit or not. They inform the family of the kind of services they can provide, and whether it can be done in the home if there is a primary caregiver or two there.

Many hospitals now are opening palliative care wings (palliative care means comfort care) so that people can receive this care if they are in some ways too ill to be at home.

One of the most important things about hospice care is that hospice caregivers are around death and dying much more than anyone else, including doctors, so they have developed an intuition and knowledge base. They have become invaluable as a resource to ask questions such as, "What exactly is going on with my mother? Is she better, worse, is she going to die soon?"

Issues about nourishing the person or not can be supported in whatever way. It's such a scary thing for people, the phrase "they're starving them to death." The hospice caregiver can help the family understand that if a patient is in the dying process, they are no longer hungry and thirsty, so it's not a discomfort, and in fact, if they are dying, the excessive fluids being put in the body can cause more discomfort, more choking or more bedwetting.

Hospice is such a valuable resource, and in my opinion, when anyone is seriously ill they should be called in for the evaluation to learn what the situation is and help the family with issues of denial so that they, the whole family, can start gently and lovingly become part of the dying process.

Laura, we are almost out of time. Before we wrap things up for today, do you have any final comments for us?

Talk to the people you care about as often as you can about your wishes for end-of-life care. The most important thing I have to say is that in having these conversations, there is no way you cannot enhance the life you are living now with the people you care about. You're bringing it full circle, life and death, and it brings us closer to each other instead of separating us from each other, which is what happens when we tell each other lies about what's going on. Speaking about death enhances our life.

Our thanks to Laura Larsen, RN, for joining us today. For more information please read Facing the Final Mystery: A Guide to Discussing End-of-Life Issues .

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