Determining a patient’s wishes for end-of-life care is one of the most challenging issues in medicine. Too few people discuss or complete advance directives while they still have the mental and physical capacity to do so. Then, if illness strikes, medical staffs and loved ones are forced to make crucial decisions for patients, without their guidance.
That is a recipe for heartache, family dissension and questionable medical interventions. Many folks are aware of these potential nightmares, yet they continue to avoid the task of filling out the directives. Some people don’t trust them. Others are overwhelmed by the complexity, or simply prefer not to dwell on thoughts of future sickness and death.
Because end-of-life preparations can be so daunting, efforts should be made to simplify, demystify and encourage them.
To meet those goals, public policy changes are being explored, but they have hit resistance. A New York Times article detailed a controversy over Medicare and insurance reimbursements to doctors who counsel ailing patients on end-of-life care. Critics say that talking with doctors could push patients (even if unintentionally) into giving up too soon, forgoing medical care.
On the other hand, it can’t be argued that patients would be better off with no end-of-life discussion at all. So what is the right course? Legal steps and family discussions.
Certainly, doctors have an important role to play in this challenge — particularly for patients who have escalating illnesses. Yet the complexities of setting up advance directives involve not just a medical dialogue but also those legal steps and family discussions. This is true for the young and healthy as well as the old and sick.
Ideally, such outreach could help people get beyond the inertia and fear to help them complete the recommended documents, get them witnessed as required and distributed to family members.
• Naming a health care surrogate or durable power of attorney (naming someone to make health care decisions for you, if you are incapacitated).
• Filling out an advance health care directive, which sets out your wishes on whether to use or reject life-sustaining treatment, or pain relief that could hasten death. Maryland makes it relatively easy. An advance directive must be signed by you in the presence of two witnesses, who will also sign. If you name a health care agent, make sure that person is not a witness. State law does not require the document to be notarized.
• In some cases, “do not resuscitate” orders can be considered for the terminally ill, people in a “persistent vegetative state,” or others “where advanced life-saving measures can be painful, intrusive and futile.” Even with a DNR order, patients still can be treated for pain relief. And in Maryland, such an order is reversible at any time.
The choice should belong to the patient, whenever possible, to determine whether he or she wants to try all medical options or opt for palliative care. Advance directives can help clarify this preference.
In the last session of the Maryland General Assembly, bills that would have allowed legalized medical aid in dying were diluted in committee beyond the intent of its authors, and never passed anyway. As initially drafted, it would have allowed a terminally ill patient to approve her or his own death by physician. A person would need to consent three times — twice orally and once in writing — and two doctors would have to confirm that person is of sound mind, if a physician deems a psychological evaluation necessary. Seven states and the District of Columbia have legalized medical aid in dying. Maryland has brought it up each year since 2015, and it will likely be debated in Annapolis again next session. So that may someday be another option for people to consider.
The first step is to get more people through the exercise of identifying their care preferences. It is a process that can spare people and their loved ones untold anguish. Those are benefits too important to ignore.