(Note: The pdf for the issue in which this article appears is available for download: BIFOCAL Vol. 35, Issue 6.)
Everyone holds in their heart a story about a loved one or friend whose death was either poignantly peaceful or painful. Unfortunately, too often it’s the latter, involving of a litany of trips to the hospital, rescues in the ICU, burdensome last ditch treatments, unmanaged pain, and an army of specialists who treat an organ or two but not the whole person.
In theory, we have had ways to avoid these unwanted scenarios for more than 30 years. Every adult can write a health care advance directive, such as a living will or health care power of attorney, to make their goals of care and preferences clear. But, conventional advance directives, in and of themselves, have not proven very effective, and only about a third of adults even have one.
One major obstacle has been a misunderstanding of the nature of the task. We call this process advance care planning. A plethora of health decisions statutes and forms in every state have fed a misperception that the task consists of completing a legal document. The reality is that the heart of advance planning is a process made up of thoughtful conversations that start at the kitchen table with loved ones. This is the harder part of the process.
Conversations need to focus on two important questions. First, who can serve as my most capable health care agent or proxy and make health decisions on my behalf if I become incapable, even temporarily, of speaking for myself? Second, what guidance can I give my agent and anyone else involved with my care about how I would want decisions made?
Once sufficient progress has been made on these two tasks, then the writing part kicks in. The only real legal piece is the appointment of a health care agent. It’s important to do that in a way that complies with state law, because the authority of your health care agent is a creation of state statute. But this is not a hard task. Forms are available to do this, such as the Commission’s Multi-State Health Care Power of Attorney. Lawyers also routinely do these forms for clients. And, lawyers who fully understand advance care planning will also provide tools to help you with the conversations that need to precede signing a legal document.
Most people also want to know, “How specific do I need to be about treatment wishes in my advance directive?” Most of the standardized forms you encounter have all sorts of check boxes for choosing preferences about DNR orders, nutrition and hydration, and other interventions in various states of illness. For most people, these treatment decisions are distant and hypothetical. Thus, for most people, it is generally not a good idea to be too specific, because substantial research literature shows that people tend to change their minds about what they want as their diseases progress. We are often willing to redraw the line at which we feel enough is enough. When it comes to death and dying, ambivalence is our middle name, and that’s perfectly normal.
Instead, it is more helpful to know what your life values and priorities are. For example, what’s more important to you? Surviving a little longer no matter what? Living with serious disability as long as you can be aware of people and relationship? Strictly following certain religious precepts? Avoiding serious financial burdens on your family? Being comfortable, despite serious illness? These are questions for which you can’t just check a box on a form.
There is a time for being specific. When you reach and advanced stage of illness and you still have the capacity to understand your condition, prognosis, and treatment alternatives, then you are in a position to make specific decisions about your care plan in collaboration with your care team. If you lack the capacity to participate in those decisions, then your appointed health care agent should be prepared to fulfill that role. One of the emerging medical protocols to do this is called POLST or Physician Orders for Life-Sustaining Treatment.
POLST is a clinical process of communication between health care professionals and patients with advanced illness or frailty (or their authorized surrogate). These are generally patients for whom their physicians would not be surprised if they were to die within the next year. At the same time, these patients may also live considerably longer than a year. Predicting the timing of death is far from an exact science. The POLST process encourages shared, informed medical decision-making leading to a set of portable medical orders that respects the patient’s goals for care in regard to high probability emergency situations. These are decisions about the use of cardiopulmonary resuscitation (CPR), artificial nutrition and hydration, hospitalization, and other critical care interventions. An important feature of POLST is that it is applicable across all health care settings and can be reviewed and revised as needed. If used properly, POLST bridges the gap between knowing the wishes of an individual with advanced illness and having actual medical orders that will carry out the individual’s wishes.
Almost half the states have begun using some version of POLST in all or parts of the state, and most other states are attempting to develop POLST programs. And, keep in mind that the program comes in a variety of names, such as Medical Orders for Life-Sustaining Treatment (MOLST), Physician Orders for Scope of Treatment (POST), Medical Orders for Scope of Treatment (MOST), and others. It may be called something different in your state.
Looking at the big picture, you can think of advance care planning as a life-long process that evolves from the baseline task of naming a health care agent when you are young and healthy, to providing increasing guidance about your lifetime values and priorities as you mature, to confronting serious and eventually fatal illness through shared, informed decision-making with your care team. Like most important tasks in life, there are resources to help you with it, but no short cuts.
- Appointing a Health Care Agent
The Commission has published a booklet, the Multi-State Health Care Power of Attorney, offering a simple durable power of attorney for health care, designed to meet the legal requirements in nearly all states.
- Advance Care Planning Resources
Visit the Commission's Health Care Decision-Making Resources webpage for even more resources.