One of the hardest challenges in life is contemplating death. Yet it is very important to think carefully about the medical treatment we would want for that challenging time. Medical technology can now keep us alive long after we have ceased to enjoy a meaningful quality of life.
A series of legal rulings around thirty years ago established the rights of patients to decide when life support should be stopped. The fear of being kept alive indefinitely by artificial means led many to create legal documents known as advance directives. An advance directive expresses our wishes about the kind of medical treatment we would prefer. It is called “advance,” meaning ahead of time; and “directive,” meaning our directions for whether we want medical providers to keep us alive at all costs, or whether we would prefer to pass naturally when life becomes no longer meaningful. It is wise to think about this, and to create such a document, well before we are facing the end.
After thirty years, concerns have now shifted to assess whether advance directives really do serve the purpose for which they are intended. Do advance directives really ensure that we receive the treatment we would like?
The short answer is “yes but.”
Yes because it is just as important now to create a legal document by which to appoint a person to help communicate our wishes. The “but” part comes in with the issues raised below.
The answer to these issues is the same as it has always been: to establish a close relationship with one or two people – called “agents” or “proxies” – whom patients appoint to step in when patients can no longer make healthcare decisions for themselves. Patients must talk with their agents so the agents will know, in as much depth as possible, where the patient stands on end-of-life questions.
Over the years, we have learned that advance directives might not work as well as they could. Here are the concerns that have emerged:
- It is unrealistic to micro-manage health care in advance. There are so many variables that depend on the particular situation. Treating a complicated illness has been likened to a jigsaw puzzle, where each puzzle piece could fit multiple other pieces; the right fit for each piece must be arrived at, often by a team of various specialists who sort through the pieces and collaborate in assembling the picture. Under those circumstances, it can be difficult, if not impossible, to interpret a legal document that was intended to guide detailed medical treatment for as-yet-unknown conditions.
- The “check-the-boxes” approach taken by many “fill-in-the-blank” forms is too crude to be helpful in any but the most general of ways. Without additional detail, these documents don’t adequately address the nuances that almost always arise.
- Change is constant and humans are adaptable. It is one thing to imagine, when in good health, that life would not be worth living if, say, one became permanently bedridden. But when the patient is actually in that situation, new meaning in life could emerge. Choices made years in the past might look a lot different in the moment of truth.
- The prognosis can change with time. As reported in Kaiser Health News,
if a senior contracted COVID-19 early in the pandemic, and her advance directive stated that she did not want to be placed on a ventilator, doctors tended to assume that the virus was universally fatal to such seniors. Some never got the care that could have saved their lives.
- The documents must be readily available, both at patients’ homes and in agents’ hands too. They must not be hidden away and forgotten about, so no one can locate them when they are needed.
The best alternative is to create an effective, current, and available legal document backed up by serious talk between the patient and the agent or proxy. A document that meets legal requirements is essential, but beyond that: conversation in advance is the crucial additional element.
That conversation should occur first between the patient and their agent or proxy, in which they discuss the quality of life issues and what matters most to the patient. The talk should avoid excessive detail for hypothetical situations that may never arise. Rather, the aim should be to provide the agents or proxies with enough information to be able to respond flexibly to unforeseen circumstances.
These conversations can be challenging. Helpful resources to assist can be found at The Conversation Project (https://theconversationproject.org) or the Centers for Disease Control and Prevention (https://www.cdc.gov/aging/pdf/acp-resources-public.pdf).
Then, if the time comes when the patient is unable to speak or make decisions, the agent will be best equipped to convey the patient’s wishes to medical providers. Knowing those wishes in advance, the agent can focus on ensuring that providers furnish as much information as possible to make the hard decisions on the facts as they presently exist.
What if you are alone and without a person whom you trust to be your agent? First, study the guidance resources provided in this article. Then call us to create a legally effective advance directive document that spells out your wishes. And the final step would be to schedule an appointment with your doctor to discuss your wishes. Give him or her a copy of your document.
Again, all must make sure that doctors and agents have copies ready for use. And everyone should also carry a wallet card to inform healthcare providers whom to call in case of an emergency. Print one here,
provided by the American Hospital Association.
There are no assurances in this life, except that it will end for us all. The hope is that we will have delegated people whom we trust to step in when we need them – and that we will have talked with them about the kind of care we want to prepare for a passing that is as peaceful and merciful as it can be.