Imagine that your elderly father's emphysema has worsened dramatically. You're worried. If he becomes too ill to breathe on his own, what would he want for himself? How much should doctors intervene? If he's not able to make his own medical decisions, who would he want to speak on his behalf?
You're uncomfortable raising these questions, and when you finally do, he waves you away. "When the time comes, you'll know what to do," he says.
No doubt, it can be daunting to talk to loved ones about their medical preferences, especially near the end of life.
"It's quite difficult because virtually no one wants to think about dying," says Porter Storey, MD, executive vice president of the American Academy of Hospice and Palliative Medicine.
But it's important to talk about it -- to help you honor their wishes, and for your own peace of mind. And there are tactful ways to do it.
That discussion can help people put their wishes in writing in legal documents called advance directives. Doing that not only helps guide doctors; it could also prevent you and your family from becoming mired in confusion, guilt, and disagreement over tough medical decisions.
What Are Advance Directives?
Advance directives are legal documents that take effect when someone is no longer able to speak for himself or herself. They include:
- Living will: a legal document that guides health care professionals, family members, and trusted friends in understanding the types of life-sustaining measures that a person would want or not want
- Durable power of attorney for health care (DPA): allows a person to legally designate a family or friend to make medical decisions if he or she isn't able to do so
Without an advance directive, family members may disagree about how to proceed with medical treatment. That's a source of friction at a very trying time.
Benefits of Advance Directives
Storey, who practices palliative medicine in Colorado, has seen firsthand how tough it can be for families to talk about advance directives.
"Young people don't want their parents to think they're trying to get rid of them," he says. And many people don't want to think about death. "You see people who are old with several terminal illnesses who never think they're going to die."
But talking about an advance directive doesn't have to be so difficult, says David Casarett, MD, associate professor of medicine at the University of Pennsylvania and chief medical officer at Penn's hospice and palliative care program.
"If you think about advance directives as being all about death and dying and the final days, then it's really difficult," he says. "If you think about them the way they're intended -- which is if a family member ever gets to the point where they're not able to make decisions for themselves for any reason and they have a serious illness -- advance directives are really all about helping the family to come together and do the right thing."
"Framed in that light, in my experience, a lot of people are not only willing, but enthusiastic about doing advance directives," Casarett says. "It helps to make sure a family comes together and doesn't wind up arguing or disagreeing -- framing advance directives as doing something for their family, rather than for themselves."
Start the Discussion
Advance directives aren't just for the sick or elderly. So don't wait until a loved one has been diagnosed with a terminal illness to start talking about advance directives.
Life can change in an instant. Someone might have a massive stroke or serious accident, for example. So don't wait until a loved one has been diagnosed with a terminal illness to start talking about advance directives.
"Having a discussion well in advance of a crisis just gives lots of opportunity for clarification or mutual understanding," says Kathy Brandt, senior vice president in the office of education and engagement at the National Hospice and Palliative Care Organization. That way, there's time to understand why a loved one has made certain choices, how he or she reached those decisions, and what values and beliefs informed them, she says.
Having the Talk
Look for graceful ways to introduce an advance directive:
The experiences of others: If a relative or friend has been gravely ill or has died recently, it may open the door to a discussion, Storey says. Besides asking a loved one what he or she would have wanted in that situation, Storey also suggests saying, "I really want to do a good job of representing what you would want in situations like that. Have you thought about that?"
If there's no personal experience to draw from, you can point to cases that have been in the news, Brandt says.
Seeing others go through great turmoil may spur some people to write an advance directive to ensure that they don't spend a long time on life support machines or cause more distress to their families.
Transition points in life: Any plans for the future -- such as a loved one's retirement, a move to an assisted living residence, the writing or updating of a will -- are natural ways to open the conversation. "Any kinds of life events can all be triggers for conversations about these issues," Brandt says.
Set an example: Set up your own advance directives (anyone aged 18 or older can make them). Then tell your loved one about it and ask if he or she would like to do the same.
Making an Advance Directive
A family discussion on advance directives has strong value, but make sure to capture the wishes on paper, Casarett says.
Relying on memory can be tricky, and siblings may disagree on exactly what Mom or Dad told them during numerous discussions.
All states have their own advance directive forms, which can be found online. They don't require an attorney to fill them out, although some people do leave a copy with their family lawyer.
In a living will, the main goal is to help a loved one express how much medical intervention he or she wants. Casarett suggests starting the conversation generally by asking about the kinds of treatments wanted if your loved one was very sick, unable to recognize family, unable to take care of himself or herself, or unlikely to get better.
Making a Durable Power of Attorney for Health Care
Despite the best planning, a living will can't cover every medical circumstance that might arise. So it's wise to also appoint a health care agent through the durable power of attorney for health care.
"Honestly, the most important thing to me is figuring out who that decision-maker is going to be," Casarett says.
Encourage your loved one to appoint a trusted person -- a good advocate who understands his or her values and beliefs and can also talk with doctors and other family members, Brandt says. An agent is often a relative, but a friend can serve, too.
Your loved one should also understand that without appointing an agent, the role might fall to someone he or she might not have wanted to make those decisions.
Once the advance directive is completed, follow your state's instructions for the signing. Every state has a witnessing requirement -- often two adult witnesses or a notary.
Who Needs to Have a Copy?
Once your loved one has finished the advance directive, make sure the designated agent has a copy. Copies can also go to relatives, friends, and neighbors.
"We tell folks to give it to anyone who might be able to access it in the time of crisis or who might be called upon to make a decision for you," Brandt says.
A copy should go to your loved one's doctor, too. Some doctors are able to scan it into the electronic records for easier access.
Your loved one should keep a copy, too, but the document shouldn't be locked up in a safe deposit box. "That doesn't do any good in a crisis," Brandt says.