The American health care system is poorly equipped to care sensitively for patients at the end of life, a recent report from the Institute of Medicine found. But it is possible, through careful planning, for individuals to choose the kind of death they want. Consumer Reports has released a guide to end-of-life planning for families. The report offers tips for caregivers and individuals and profiles one man’s “beautiful death” at home.
KHN staff reporter Jenny Gold interviewed author Nancy Metcalf about the report. What follows is an edited transcript of their conversation.
Q: You called your report “A Beautiful Death.” What does a beautiful death look like?
Metcalf: A beautiful death is probably different for each person. The gentleman whom we focused on – Paul Sheier, a retired dentist from a suburb of Buffalo — was very clear about what he wanted. He wanted to die at home. He had terminal lung cancer. He preferred to be kept comfortable, to forgo what he believed would be futile chemo, so he could spend his last months of life with his family and friends playing golf rather than at the hospital hooked up to an IV drip.
We also did a national survey along with this article, and we found that 86 percent of adults said they would like to spend their final days at home. Fifty percent preferred pain management and comfort care over other medical treatments. Yet even among adults age 65-plus, only 47 percent had completed an advanced directive or living will, and overall only about 20 percent of adults had done that. So they haven’t really taken steps to assure what they want to happen will happen.
Q: How can we give ourselves the best chance for a beautiful death?
Metcalf: The Institute of Medicine report that came out a few months ago made very clear that we have a very medicalized way of death in the United States. And I think anyone who has gone through the loss of an older family member has probably experienced that.
Everybody over the age of 18 should have a living will or advanced directive, including young people, and very few of them have it. Bad stuff can happen anytime. You want to have those documents, and you want to think about what you want to put in them. You don’t have to go to a lawyer or do anything expensive. You can download these documents online. There’s a site called Caringinfo.org that has state-specific living will forms.
You need to make your documents accessible. The one thing you should not do is put it in a safe deposit box. That’s really hard for people to get to. You should make many copies of it and make sure your family members know where it is. You should probably give one to your regular doctor as well.
You also should designate a health care proxy –somebody you want to make medical decisions for you if you can’t make them yourself. And you need to have a conversation with that person about your preferences and values, even if it’s general. It’s something you can revisit as your health status changes and you get older.
And you need to have the conversation with everybody in your family. Because a big source of problems at the end of life is when family members have disagreements about how someone’s care should proceed, if someone isn’t able to express their own wishes. It freaks doctors out and makes them very reluctant. Those are often the situations where people can end up in court and get guardianship. You don’t want that to happen. It’s so much better if everyone is on the same page.
One of the interesting results in our survey was that 42 percent of people had provided end-of-life care for a friend or relative. That’s a big, big number — so many of us have experienced the chaos that can come with end-of-life care.
Q: How can families make sure that their loved ones have the death they want?
Metcalf: It’s very typical at the end of life for people to be demented, in and out of nursing homes, assisted living and hospitals. It’s often not even clear when the end of life is near. That can be extremely difficult.
One resource that’s hugely important is palliative care. It can work with hospice, but it can also be offered to people who have not entered hospice. These are doctors who specialize in managing [care of the] whole person, talking to them about what their values are and finding out what’s important to them in their day-to-day lives. Do they want to be treated in such a way that they can survive to see a grandchild’s college graduation, or a wedding, or one last Christmas? Or do they want to maximize feeling good and [being] unmedicated as they spend time with their family members?
There’s no wrong answer here. But the palliative care specialist is trained to listen for that and work out ways that it can happen, either in conjunction with ongoing treatment or in conjunction with end-of-life care.
It was a little upsetting, frankly, that our survey found that 61 percent of adults had never even heard of palliative care, and only 10 percent had a really good understanding of what it does. And that’s really too bad because it’s a tremendous resource for people.
If you do feel chaos surrounding you, and you don’t feel you’re getting the right stuff from your health care providers, you need to make some noise and say, “I’m having a hard time here.” And ask for a palliative care consult. Almost every decently sized hospital has that option now. You don’t have to wait for a doctor to refer you to someone — you can pick up the phone and ask for one.
Q: How do you know when it’s time for hospice?
Metcalf: It’s hard to tell. There’s a formal definition that Medicare has created which is that you can be put in hospice if, in the opinion of your provider, you have less than 6 months to live. But people usually go in much too late. It’s a fine line—you don’t want to put people in there too soon because one you go into hospice, you’ve said you’re not going to get any more treatment to cure your illness. But hospice workers are very, very oriented towards a good end-of-life care experience for the patient and they also offer enormous resources for families.
You have to ask the doctors – how much longer? And if they guess wrong, and the person lasts longer but is still on a terminal track, they can be recertified. And the amount of care hospice gives isn’t always the same. It might be very little at the beginning of a person’s terminal course and very intense at the end. Hospice care can be delivered in all kinds of settings. A great many people get it at home. You can also get it in assisted living, nursing homes or in a hospital. And many hospices have their own inpatient units.
You don’t have to wait for a doctor to refer you to hospice. If you feel like you’re pretty sure that medical treatment isn’t going to help anymore from your conversations with medical providers, you can refer yourself. You can pick up the phone and call.