Do You Want to Influence Your Health Care Destiny?

April 16 is National Health Care Decisions Day, an initiative of the Caring Conversations Project. The purpose of this annual observation is to bring together people and their circles of support, as well as health care providers, advocates, and faith communities, to educate folks about advance care planning — and empower them to engage in this important process. Advance care planning encompasses many aspects, notably thinking through your own values and preferences about your health and sharing them with loved ones and the people who provide your care. But another important piece of the process is creating legal documents called health care (or advance) directives.

Why is this important? Health care directives are a means of asserting your rights and agency as a consumer of health care. They are tools that can improve the probability of you being treated as you would like to be — especially if you may face challenges related to your culture, faith or identity. And they have the potential, if more broadly used, to improve population health by influencing respectful, person-centered partnerships between health providers and people who receive care.

The current reality? Only about 30% of the U.S. population has used a health care directive, and despite lots of educational efforts, federal legislation called the Patient Self-Determination Act, and Medicare’s adoption of advance care planning as a reimbursable service, uptake of directives hasn’t significantly increased over time. This urges attention, advocacy and modeling by example by folks in state and health system leadership. No matter your health status or where you are in the age continuum, now’s the time to execute your own directives and promote the use of them in all the circles in which you have influence.

Health care directives are for YOU if you are a . . .

Person with a serious health condition.
Several years ago, K, a mutual friend of my wife and mine, learned that she had refractory breast cancer. She and her partner M approached me to talk about planning, and we discussed her preferences, both about cancer treatment and end-of-life supports such as use of a ventilator. She then completed a health care directive form that appointed M as her health care proxy, outlined her wishes around life support, and identified her as an organ donor. The process of executing the form was useful, but perhaps even more important was the discussion that she, M, and I had about what would feel like a “good death” to her, especially as that related to controlling her pain. Within months, K passed away at home with pain management support from hospice; not, as she had most feared might be the case, at the hospital.

Person who has not found the health care system to be worthy of trust.
Stemming from over 300 years of structural racism in this country, many people of color struggle to access and receive even routine preventative care, much less culturally capable and respectful treatment when extraordinary care is needed. This history reasonably makes many people wary of any tool that could be used to ration or deny care. Related, members of the LGBTQIA community can encounter care experience and treatment challenges related to orientation and gender identity. These concerns commend consideration of use of directives to clearly outline what care an individual expects to receive, and articulate other aspects of his or her values and preferences that will equip clinicians to provide more person-centered and culturally competent care.

Person with a disability.
After I had been giving talks for years on the benefits of executing health care directives, a highly regarded Connecticut disability advocate contacted me to let me know how limited and insulting my lens on the issue had been for her. Not only did she reasonably take issue with my orientation that health care directives were primarily about declining care, she also explained that describing use of a gastronomy tube as an extraordinary end-of-life support was insulting to her and others, who use them as their primary means of taking in nutrition. She emphasized that health care directives for someone like her were a means of advocating for even the routine care that those of us who do not have disabilities receive without thinking about it. This was a humbling and instructive moment that re-shaped my thinking. It also later sparked my interest in use of directives by people who have serious behavioral health disabilities, as a means of being as self-determining as possible in the event of a mental health crisis.

Spiritual person.
 A gentleman of advanced years once said to me, “I let go and let God decide.” Acknowledging that some folks feel that matters of life and death are in the hands of a higher or universal power, no matter what your faith, there is likely to be a health care directive that will honor your convictions and practice. Examples of this include ensuring that you receive any and all available interventions to limiting care consistent with a faith practice (e.g. a person who is a Jehovah’s Witness declining a blood transfusion, a person who is Catholic indicating that it is not acceptable to withdraw assistance in eating and drinking at the end of life).

Aging adult.
Note that I said aging in lieu of “older” adult. We are all aging. That said, everyone from people in the throes of their mid-life crises to people at very late life stage can benefit from a health care directive. Middle-aged people should think about the burdens their children may face, in the absence of clear statements about health care wishes. Older adults can meaningfully influence the care that they receive in the event of an urgent health need.  And people of very advanced age should still be thinking through all available options. Many years ago, I was giving a talk on health care planning at the senior center in Wallingford, Connecticut. The room was packed, and most of the audience was carefully following as I walked through the official state forms. Not so a gaggle of very senior women in the back row, who were struggling to contain a serious fit of giggles. Finally, a little piqued, I said, “Is there something that you’d like to share, ladies?” After some hesitation, one woman finally said, “Are any of our parts still good for organ donation?” Ok, good question, which I will answer below.

Some Things to Know

You have a constitutionally protected right to accept or refuse medical treatment. Those rights are best promoted through formal expression of your wishes.

A U.S. Supreme Court case from 1891, Union Pacific Railroad v. Botsford, established that “every individual has the right to possession and control of [their] own person, free from restraint or interference of others, unless by clear and unquestioned authority of law.” Acknowledging the terrible reality that this excluded Black Americans, it was one of the roots of important, successive developments in ethics as well as court decisions around health care decision-making. This led up to the Supreme Court’s decision in Cruzan v. Missouri Department of Health, which recognizes:

• that you have the right to:
  • accept or refuse medical treatment (although note that unless your state has legally recognized aid-in-dying, this is not included in medical treatment);
  • be informed as to the risks and benefits of those decisions; and
  • express your views through a person whom you have appointed as your proxy decision-maker, if you can’t communicate on your own; but also
• that the Constitution permits states to safeguard their interest in the lives of citizens by requiring clear and convincing evidence of their health care wishes.

What is the most clear and convincing means of expressing those wishes? Health care directives.

Health care directives are not just for the end of your life

Health care (or advance) directives is the generic term for:

• documents that provide instructions concerning our health care wishes (most commonly known as a living will); and
• documents that appoint people (proxies) to speak for us if we cannot.

Directives can be used to:

• identify a trusted family member, friend, or other member of a circle of support to voice your opinions
• state wishes, both pro and con, around:
  • “life support” (typically, cardio-pulmonary resuscitation, mechanical assistance in breathing, and assisted means of eating and drinking); and
  • other types of physical and mental health care (e.g., antibiotics, chemotherapy, blood transfusion, behavioral health drugs)
• indicate wishes around organ donation, up to and including donation of remains for medical research (an option even for people with “old” parts!)
• plan ahead for a mental health crisis

Many states have also created opportunities for people to package the above types of preferences with decisions around representation by a guardian/conservator, use of opioids, and/or treatment of their remains following death. Alternatively, the Five Wishes tool builds in more personal preferences about your death, but does not meet legal requirements in some states. Other resources include this helpful PEW Charitable Trust overview of how a number of faith communities approach advance care planning, and a SAMHSA guide on psychiatric advance directives, which includes practical information and sample forms.

Health care directives vary, depending on the state in which you live. No matter where you live, you don’t need an attorney’s help to complete health care directives.

Frustratingly, while Five Wishes has been proposed as national form, each state continues to have its own health care directives and we still don’t have a universally recognized set on which people across the country can rely. For more on this, see this great article by Charlie Sabatino, until recently of the American Bar Association Commission on Law and Aging. Because of the variation across states, it is important for people to access guidance and forms for the state in which they reside.  See this CareInfo resource for free, reliable downloadable forms. Examples of features of advance directives that vary across states include:

• requirements for who can serve as witnesses;
• whether the directive becomes effective immediately or is instead dependent on something occurring – most often, you becoming unable to speak for yourself and/or having either a terminal condition or becoming “permanently unconscious”; and
• whether the directive must be notarized to be effective.

Most states permit you to use something that is similar to their standard form, but some require you to use only that form. Also, many, but not all, states recognize health care directives validly executed in another state.

The real work of completing directives, however, is thinking through your values and preferences, and initiating and continuing conversations with your loved ones and medical providers.  To help you get started, see this excellent Toolkit for Health Care Advance Planning, created by the ABA Commission on Law & Aging. I particularly recommend tool #7 (the Proxy Quiz) – a great means of ensuring that you and your proxy are on the same page. Otherwise, health care directives are generally designed for self-help. You do not need to pay an attorney to help you complete them.

Health care directives can safeguard your privacy.

Completing health care directives is typically a pretty quiet, confidential act in which you express your wishes and then share them only with those who need to know: family, close friends, medical providers, spiritual advisors. With that said, I can’t resist adding – don’t be so private that your health care directives aren’t available when they’re needed! Don’t keep them in your safe deposit box with your last will and testament. They need to be at hand – in your kitchen drawer, glove box, in a smart phone app and/or in your Electronic Health Record at your doctor’s office.

Contrast this with scenarios in which you have not expressed your wishes via a directive and become unable to speak for yourself following a car accident, sudden onset of serious illness, or coma.  If you have not already identified a proxy, and there is not timely consensus among the family members who are able to be present, a hospital ethics committee may have to become involved in considering the circumstances of your situation.  Another consideration is that if you lack legal capacity to make decisions, for reasons of coma or cognitive impairment, it may become necessary for people who care for you to seek court appointment of a guardian to make health care decisions. The terrible circumstances of the Terry Schiavo situation remind us that public scrutiny of these intensely private, personal decisions is rarely of benefit.

Completing health care directives is an act of love.

Something that people may not have top of mind in considering whether to complete health care directives is that it can really be an expression of love. Doing this for yourself can be an example of self-care that can help reconcile you to a more empowered experience of disability, illness, and death. It can also anticipate that the types of situations in which there is typically an urgent need to discern your wishes about health care tend to be time-bound, emotionally fraught and frantic for those who care about you. Directives, in and of themselves, are not a solution as it is dialogue that really brings them to life. But directives are a legal safeguard and an important means of furthering intimate conversations, both of which can positively influence care during our lifetimes and at the end of our lives.

Don’t wait one more minute to influence your destiny! Complete your health care directives today!