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Good End: End-of-Life Concerns and Conversations about Hospice and Palliative Care
Hats Off Books, July 15, 2005
Trim: 5.5 x 8.5
“Calm, sane, caring advice from a kind physician with decades of experience in this field. Highly recommended!”
Executive VP American Academy of Hospice and Palliative Medicine
The prospect of dying can be overwhelming, whether it’s happening to you, a family member, or a friend. In Good End, Dr. Michael Appleton addresses questions about hospice care and end-of-life issues with compassion and honesty. This is a must read for patients and families who are on hospice or considering hospice care.
#1 About hospice
My doctor referred me to a hospice. Just what does that mean and why do I have to go there? I’d rather stay at home.
Well, first of all, hospice isn’t just a place. Hospices did begin as places where the sick could go to be taken care of at the end of life. There still are hospices where dying people can go for care. We think of hospice, really, as a particular kind of concept or philosophy of care at the end of life, where even when cure isn’t possible, relief of pain and other symptoms is provided. Hospice is like the bond that can hold things together at the end of your life. It binds us to you and your loved ones. We become a part of a healing family to make your journey easier. Most hospice care is done in the home, so you don’t have to go someplace else; relief happens where you live. I prefer to think of hospice as palliative care (providing comfort) with the emphasis on living as best you can in the time left rather than concentrating on death and dying. I know that’s hard to do when you get bad news about a terminal diagnosis and all your care focuses on sickness rather than wellness. During the transition from aggressive curative treatment to hospice care with emphasis on relief it is often difficult to think of this confusing period as the beginning of an opportunity to focus on quality of life. It takes some time to adjust. Please let hospice help you along one day at a time.
#2 Hospice: the “H” word
Doesn’t hospice mean I’m going to die soon? And if it doesn’t and I live for six months, do I have to die on time, get kicked out, or what?
For most people “hospice” is a scary word. Yes, it is about dying, but more importantly—and I want you to listen carefully to this—hospice is about caring when cure is no longer possible. It’s about living the best way you can during the end of your life. No, you are not required to meet some schedule for dying and it would be great if we could kick you out if you had some miraculous cure. Actually, I have never seen that happen. On occasion, some people improve for a while and may even decide to stop a hospice program. Our mission is to help you to live as fully as you can. Hospice care is always a choice and you can always change your mind. We will always be here if you need us. Hospice programs have unlimited benefit periods and we stay with you as long as you need us and want us. If I could give you any one piece of advice it would be to focus on living now, as well as you can.
I know I repeat myself when I talk about “the Now” but in truth it’s the only place you can be and have any power. Let us help you and let us take care of the worry about tomorrow. As paradoxical as it seems, in this time of crisis, hospice can offer an opportunity. The reality that the end of life is in sight is often a stimulus for people to use this living time as the final stage of growth. It is here in hospice that you can find the guides to reach that goal.
#3 New advice
My doctor and the cancer specialist both explained everything about my disease to me and I feel comfortable with what I’m doing. Now my sister comes from back east and demands that I get another opinion from a good doctor she’s heard about who has developed a new treatment that can cure my cancer. What should I do?
My first response would be to tell you to tell your sister to mind her own business and send her back east. On second thought, maybe it would be best to understand your sister’s concerns. If she’s like most people in this situation, she feels helpless and powerless and wants to do something, anything, to help. She may feel some guilt for not being as close to you as she thinks she should have been. In any event, it’s probably best to just sit with her, explain everything, and even ask her to participate in a meeting with your hospice team. She’s no doubt worried about losing you and this visit is really a wonderful opportunity for you two to spend some time together. She needs to be your sister and take care of you and you can let her help; that’s the gift you give to her.
It sounds as if you trust your physician and your oncologist. I certainly believe in second opinions, but there are situations where another piece of advice just stirs up the pot, wasting money and living time. There will always be news about dramatic cures. It’s interesting how so much of that information appears on the front pages of the magazines and papers at the supermarket checkout counter. Most of that stuff encourages false hope and ultimately leads to disappointment. It stimulates denial and the secret hope we all share that maybe a miracle will occur. There are a lot of cracks in medicine—fewer today than in the past, perhaps. Just the same, there are still the snake-oil salesmen, promising to fill in the cracks—only now they’re on TV and the Internet. Maybe it’s best to trust the decisions you’ve made with your physician and get on with living.
My sister looks so sad and depressed since she found out she has cancer. She has lost weight and sleeps a lot more. Can we give her an antidepressant or something to pep her up and give her more energy?
People who are fatigued (which happens with most terminal illness) often look sad. Depression is a normal reaction to learning that your life will end. It never seems to be when you planned—if you truly ever did have a timetable. People go through many emotions when dealing with tragic and unanticipated events, particularly the prospect of dying.
Having to be with your sister at this difficult time is very hard to endure. Just be sure that you don’t want to fix your sister so you don’t have to tolerate her pain. Everybody wants to help, to fix things in some way. Being with a sad, withdrawn, depressed person is very challenging because the healing that you bring is not in the form of good advice or suggesting that your sister “cheer up.” Your help is not necessarily with an antidepressant medication (which may be only part of the help). Your gift (and it is a gift) is your presence. When a person is faced with the end of their life they may experience several kinds of emotional reactions. This is the unpredictable human way of coping. It can be difficult to be around a person who is angry or withdrawn. Some people act as if their terminal diagnosis doesn’t exist when it’s clear that’s not the case. Others desperately look for ways out of an inescapable end. Some people appear docile and accepting as if they are at complete peace with their situation or perhaps ignorant of what’s going on. It is impossible to predict what behavior to expect and it’s a challenge to know the optimum response. There may be times when you can’t seem to get it right and when the best response may be no response. Your willingness to simply be present, there with your sister, without any expectations and without any sage advice, for however long it takes, is good therapy—for her and for you.
Depression is a state that is often difficult to describe to someone who has not experienced it. It is more than the feeling of sadness. Some people experience a sense of hopelessness along with an actual feeling of distress in the chest. Perhaps this is what has been described as heartache. In any event, the experience is that of being lost and sometimes thinking that nothing is right now, nor will it ever be right again. Severe depression requires medication. Treating with antidepressants cannot change reality but it can significantly alter perception, lift the cloud, and improve the quality of life. There are many drugs that are effective. This is a vital issue to be discussed with your hospice physician.
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