When Dominic, a warm and sociable gentleman in his late 80s, entered a nursing home with a terminal illness, he had a firm desire that no extraordinary medical measures be performed on him at the end of his life. Dominic also had something else important: A signed and witnessed advance health care directive that named his daughter as his health care proxy, in the event he was unable to make decisions about his own medical care.
"His daughter was very clear about his wishes as well," recalls Joel Karlin, LMSW, a medical social worker with Visiting Nurse Service of New York's Hospice and Palliative Care division. As Dominic neared death, some newer staff members at the nursing home, who didn't know his background, wanted to send him to the hospital for life-prolonging care. "When his daughter heard this, she immediately called me," says Joel. "Working with a nurse colleague who was onsite at the nursing home that day, we were able to make sure his wishes were honored." Dominic was made comfortable and a short time later his daughter joined him at the nursing home, where he passed away peacefully with her at his side.
Dominic's story is a perfect example of why advance health care directives--formal documents that spell out your end-of-life wishes for medical care in the event that you can't make decisions for yourself--are becoming increasingly popular. A recent survey found that as of 2010, 72 percent of Americans age 60 and older now have some type of advance directive in place, up from 47 percent just 10 years earlier. While these directives can take various forms, their general purpose is always the same -- to provide physicians and other medical caregivers with guidance on how to proceed if you should become incapacitated and unable to direct your own medical care.
The key, as the name implies, is that this document needs to be completed in advance, while you are still in complete command of your faculties. Drawing up the document itself is fairly simple; the more difficult part comes beforehand, including deciding what kind end-of-life care you do and don't want to receive, and who -- if anyone -- you want to empower to make decisions in your stead.
Discussing an Advance Directive with Your Caregivers and Family
The first challenge in setting up an advance directive is to acknowledge the need for one. Directives aren't just for the elderly--experts say it's never too early to have one in place, in case of an accident or sudden, unexpected illness--but they become more important as a person becomes older or develops a serious medical condition. Even when it's clear that an older loved one would like to have control over their end-of-life medical care, however, putting this down in writing isn't always easy.
"Both family members and the patient themselves may resist putting their wishes about dying down on paper, because they feel this means they're giving up hope," says Rivkah Brenenson, LCSW, a Hospice Social Work Manager with VNSNY. "Or the patient may see the need for a directive, but not want to be directly involved in the discussion." For this reason, social workers and other caregivers at our agency and other health care organizations around the country are trained to tactfully raise the issue in a positive, constructive way. "The discussion needs to take place in an atmosphere of safety and trust," notes Rivkah. "We explain that having an advanced directive is a way of ensuring a natural, peaceful death instead of being hooked up to machines."
Drafting an Advance Directive
Once everyone agrees that an advanced health care directive is in order, the next step is to draft one. Each state has its own format for these directives, which can be downloaded from the Internet. While these documents are legally binding, they don't need to be drawn up by a lawyer, but they do have to be signed in front of a witness who will then sign the document as well. Some states also require the document to be notarized.
An advanced directive can include several elements. The most common are:
A living will, in which you spell out your wishes regarding what life-prolonging measures you do not want to be taken on your behalf. Specific issues addressed may include declining the use of CPR, a ventilator, or artificial hydration or nourishment, and requesting that doctors make management of painful symptoms their top priority.
A health care proxy, which gives another person--typically a relative or close friend--a Durable Power of Attorney for Health Care, enabling them to make decisions about your medical care in the event that you're unable to do so. Often a directive will include a primary health care proxy and an alternate proxy in case the primary proxy is unavailable. Deciding who you want your health care proxy to be is a critical step. You may be surprised to learn that people don't always select their closest family member. "The important thing is to choose someone who clearly understands what your wishes are, and can be trusted to ensure that they are followed," says Rivkah.
Another approach is the Five Wishes format, which covers both a health proxy and important end-of-life considerations. Your wishes about organ and tissue donation can also be included in your advance directive.
Even if you have a comprehensive living will, naming a health care proxy is strongly advised, since it is virtually impossible to cover every potential scenario in a living will. You should spend extensive time with all appointed proxies discussing your end-of-life wishes so your proxies clearly understand them.
Other key points to keep in mind:
Your directive can be changed at any time. The American Bar Association recommends reviewing your advance health care directive at the start of each new decade of life, and also after divorce, death of a loved one, diagnosis of a serious medical condition, or if your health suddenly deteriorates.
In the absence of a living will or a health care proxy, physicians may feel compelled to implement life-saving measures even if all signs indicate that an individual is likely to die shortly anyway. There are also certain cases when a directive's instructions may not be followed. Emergency personnel, for example, are required by law to preserve life if possible until the patient is under a physician's care, at which point the directive takes hold. Some individuals have also drafted directives instructing that food and water be withheld from them if they are in an advanced state of dementia--a request that some feel cannot be honored on ethical and legal grounds.
Making Sure Your Directive is Accessible
Finally, even if you've drawn up an advance health care directive that covers all the bases and is agreeable to everyone involved, it still can't be enforced if the loved one's caregivers don't have it in hand. This means the directive needs to be readily accessible at all times, so that it can be delivered to all appropriate medical personnel as needed. As Rivkah observes, "I've met a number of people who have drawn up a directive, but have no idea where it is."
To avoid this, keep your directive in a handy, well-marked file, and make sure your health proxy, other loved ones, and your attorney have copies on hand as well. You can also scan your directive and store it as a digital file, which can then be emailed to whoever needs it. Additionally, there are online resources for storing advance directives, including the free smartphone app "My Health Care Wishes," designed by the American Bar Association, and "My Directives," a free online resource.
"Creating an advance directive is a gift to your family and your loved ones," adds Rivkah. "It's so much easier when they can make decisions from a place of confidence, knowing what you wanted."
For more information, check out the links below or talk to your doctor.
What is advance care planning?
New York state health care proxy
What are advance care directives?
What you need to know about living wills and advance directives
Advance directives and long-term care
"The documents you need, when you need them"