Caregiver & Elder Care News
End-of-Life Planning: Toward ‘A Beautiful Death’
Consumer Reports has released a guide
to end-of-life planning for families – see video below
November 5, 2014
6, 2014 - 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?
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?
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
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?
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
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?
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
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.
This article was produced by
Kaiser Health News with support from
The SCAN Foundation.
information is reprinted from
kaiserhealthnews.org with permission from the Henry J.
Kaiser Family Foundation. You can view the entire Kaiser
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