The Importance of Advance Health Planning
Nathan Kottokamp, Esquire
Ben Franklin wisely quipped: “Nothing in life is certain but death and taxes.” Unfortunately, without a specific deadline on the death issue, most of us put off the planning for it-as well as the health crises that often precede it. In fact, it is estimated that 75% of Americans have never taken the time to discuss their wishes or provided any written guidance to loved ones or healthcare providers in the event they are unable to speak for themselves. The consequence of such inaction is a very real public health issue in which care is often delayed, more expensive, and traumatic to loved ones.
Recognizing the above, National Healthcare Decisions Day (“NHDD”)(www.nhdd.org), April 16, exists to encourage and empower all Americans to take the simple steps to be ready for the unexpected, to provide the gift of guidance to their loved ones, and, ultimately, to be sure that patients get the care they want and need if they are ever unable to speak for themselves. Professionals of all sorts can play a significant role in the effort to highlight the importance of making advance health care decisions and to provide tools for making these decisions. For health care providers, discussing advance care planning should be a routine component of patient encounters. For health care, family, trusts and estates, and elder lawyers, this is an issue of great importance to clients. Furthermore, financial planners should discuss the implications of complex medical interventions with their clients. For any professional seeking pro bono experience or an opportunity for public speaking, NHDD offers that, too.
In the debate about national health care reform, we witnessed a media firestorm over “death panels.” A decade ago, the Terri Schiavo case gripped the nation. And, nearly thirty years ago, the case of Nancy Cruzan (whose case, like Schiavo’s, involved a request to remove a feeding tube) went all the way to the U.S. Supreme Court. The Cruzan case also led to passage of the Patient Self-Determination Act and laws requiring nearly all healthcare facilities to inquire about advance directives. These cases have vividly demonstrated that many Americans have strong feelings about how we should treat those who cannot speak for themselves, how we want our own ends to be (if given a choice), and what makes life meaningful in the first place. Yet, only a small minority of all adults have executed an Advance Directive. A major contributing factor of this is that patients are often not asked in a meaningful way at hospitals or by healthcare providers in non-hospital settings. Indeed, one major study of patient records found that fewer than 50% of severely or terminally ill patients had an advance directive in their medical records—despite the fact that many of them had myriad interactions with the healthcare system before their major illness.
The reality is that advance directives (naming a healthcare agent and/or creating a “living will” regarding end of life wishes) are important regardless of age or current health. Simple proof: Cruzan and Schiavo were each in their twenties when their medical events struck. Beyond these high profile cases are those that come before ethics committees around the country every day because people do not have advance directives in place, even though there was plenty of time and a variety of good reasons to engage in advance care planning. Among others, these cases include:
Patients who experience complications from elective surgical procedures;
Unmarried pregnant women who experience post-partum complications;
Residents of nursing homes who have acute health episodes; and
Patients with a range of chronic and progressive conditions who have never been asked about their advance care wishes.
In many cases, the lack of advance care planning leads to a tragedy: families dealing not only with the grief of loved ones (of various ages) who are suddenly unable to communicate—and often near death—due to an accident or unexpected medical problem, but also the heartbreak of trying to figure out who should make healthcare decisions and what those decisions should be. In many cases, this uncertainty could have been prevented with the simple act of executing an advance directive. Even if an advance directive merely names an appropriate decision-maker, this choices goes a long way to improve situations in which patients cannot speak for themselves.
Ultimately, NHDD strives to provide much-needed information to the public, reduce the number of tragedies that occur when people’s wishes are unknown, and improve the ability of healthcare facilities and providers to offer informed and thoughtful guidance about advance healthcare planning to their patients. It also seeks to address the various misunderstandings in the public about advance directives, including that:
People do not know the differences between a living will and a healthcare power of attorney.
People believe advance directives are only used for limiting care.
People assume that creating an advance directive is hard to do.
People are unaware of the need to talk about healthcare planning when they are healthy (assuming severe illness or a catastrophic injury will never happen to them).
Significantly, there is no “agenda” for NHDD other than education and improving the ability to honor patients’ wishes. To that end, the event exists to encourage all people will discuss and document their wishes, whatever they are.
To be sure, all Americans should make their healthcare wishes known, not only to protect their own interests, but also as a gift to their loved ones. As mentioned above, professionals of all sorts should routinely encourage all their patients/clients to engage in thoughtful advance care planning. Consistent with all of this, a key theme of NHDD is to encourage professionals to “lead by example” and ensure that they have documented their own healthcare choices. Indeed, experience has shown that engaging in one’s own advance care planning makes it easier to discuss the topic with others.
Admittedly, advance directives have limitations, but the bigger problem is not with the documents themselves, but the failure to create them and honor them. Among the things that professionals can do is to:
Lead by example–execute your own advance directive and see that your loved ones have done so as well
Work with their individuals to ensure that they are in compliance with requirements of applicable laws on advance directives—state-approved forms are available in almost every state.
Volunteer to speak at an NHDD event in the community (at a healthcare facility, library, religious institution, etc.)
Give a continuing education presentation on advance directives (either public or in-house)
Present an advance directives “brown bag lunch” session for your staff
Write an Op-Ed on the importance of advance healthcare planning or present a PSA on the radio about NHDD
Write a piece for your professional association’s magazine or on-line newsletter
Offer free office hours on April 16 to provide the public with advance directives forms
Volunteer to create or update your state-specific website on advance directives
Visit www.nhdd.org for more ideas and resources
Spread the word in the community and discuss the topic in places of worship, with civic groups, and with friends
Many of the above are great opportunities for young professionals to gain speaking experience, retired professionals to stay engaged, and for all professionals to pick up some new clients.
NHDD’s motto is that “your decisions matter,” but a person’s choices may be of little or no practical use if they have not been communicated to others. In honor of NHDD, please take a few moments to reach out to relevant others (patients, clients, and loved ones) on April 16 (or the whole week or month) to encourage them to decide, discuss, and document their wishes, whatever they may be. For those people who already have an advance directive, encourage them to use April 16 to revisit the document to be sure it is still accurate and remind their loved ones of its contents—as well as the need for them to write their own.
For healthcare providers, there are numerous steps that can be taken to facilitate advance care planning:
Reexamine any existing advance directives policies and/or create new ones.
Ensure that staff are documenting, in a prominent part of the patient’s record, whether the patient has an advance directive.
Ensure that professional and support staff are educated on the topic.
Ensure that there is up-to-date information and forms available for patients that is consistent with applicable state law.
The website www.nhdd.org has a variety of free information, including free advance directives forms for every state, and tools to assist with thoughtful reflection on healthcare choices. Please use these resources and share them with others.
Nathan Kottkamp, a partner with McGuireWoods, LLP, in Richmond, VA, is the founder and chair of National Healthcare Decisions Day, a grassroots collaborative effort to inspire the public and providers to take action with respect to advance care planning. He can be reached at firstname.lastname@example.org.