Q. What are advance
health care directives, and why did you decide to research them?
advance health care directive is a set of documents that appoint a person to
make your decisions when you no longer can and also explain what medical care
you do and do not want at the end of life.
I became interested in these
topics because of my family. My father was an estate attorney and my mom was a
nurse, so questions of life and death were dinner table conversation growing
up. I remember my father talking about writing advance directives for his
clients and talking about what he would want if facing the end of his life. I
was very young when my grandparents died. I can remember being a teenager when my
grandmother had a feeding tube while she was actively dying, and my father
talking to the hospital administrator about removing the tube so that she could
pass peacefully. I thought that it was great for my grandparents to have such
strong advocates making sure their wishes were followed. My life’s work has
been about helping others be able to make their own decisions and to advocate
for themselves in similar circumstances.
Q. Many people might
think that advance directives are only for elderly or terminally ill people who
wish to avoid medical intervention at the end of their lives. What other
demographics and motivations have you uncovered in your research?
A. When portrayed on television
and in the movies, we see images of older people drafting and using these
documents when they are dying. And yes, these documents are important for them.
But consider the person under age 45 who is most likely to die suddenly and
unexpectedly from accidents, murders and violence. That person is unlikely to
be prepared, but his or her family still has to make the same decisions. We
think of dying as something that happens in old age, but death often finds
those who are young and unprepared.
We know nationally that about a
quarter of adults have completed advance directives. People over 50 are most
likely to refuse sustaining treatments like resuscitation, breathing machines
and feeding tubes, while people under age 50 are more likely to request such
Q. You also found
that people aren’t always telling their loved ones about their wishes, even
once they have an advance directive. Why does that matter, and what sort of
ethical dilemmas arise when these wishes aren’t shared?
A. This is one of the most interesting
and problematic findings in my research. Of people with an advance directive,
about a third give a copy of the documents to their physician, and even most of
those patients never talk to their doctor about it. We assume that doctors will
bring it up, but most doctors are reluctant because they think we don’t want to
talk about death. The lesson is that we need to bring up the topic with our
doctors and our families.
When you don’t share your wishes,
you can cause all sorts of family drama. In my work as a clinical ethicist,
I’ve seen families torn apart by not knowing what to do, not knowing if the
decisions they make are the ones the patient wanted, or even worse, when
different people in the family want to do different things. In some families, they
never talk again because of these choices. We talk a lot about these documents
being for having your own wishes followed, but more importantly, they are about
giving your family a peace of mind that they are making a decision that you
wanted. Studies show that families who talk about dying and who have these
documents have an easier time grieving.
Q. What other unexpected
discoveries have you found in your research on this issue?
A. The most surprising finding is
the large percentage of people who fill out an advance directive and request
aggressive treatment at the end of life, such as a dialysis or a ventilator. I
think there’s this assumption that anyone who completes this document is
refusing care, but the reality is this is a statement of our wishes and many of
us want aggressive treatment until the end. The lesson for health care
providers is to actually read and discuss these documents because you can’t
assume you know what they say.
Kristin Claes Mathews