Over the course of my career I had many opportunities to talk with people about end of life care. Sometimes those conversations centered around real world decisions that people faced. A family member was incapacitated and medical decisions needed to be made. I’ve sat in hospital conference rooms with doctors and family members as they discussed options and made plans. I’ve also had many opportunities to speak with people about their wishes in less crisis-oriented settings. Several times our church sponsored discussion sessions. We have, on occasion, provided various forms for creating advance directives that people could use to make their wishes known to family members.

Throughout the process, I have been careful not to give medical or legal advice. I am not qualified to give either. What I have done is to listen as carefully as possible to what people have said about their values and concerns. I have also invited palliative care doctors and attorneys to speak to groups in the church as they considered their options.

Through the process I have come to have a bit of skepticism about the various forms of advance directives that are prepared. The problem with advance directives is that they cannot imagine all possible scenarios. A Living Will seeks to address circumstances in which a person is terminally ill and unable to express their wishes, for example a person in a state of unconsciousness from which they are not expected to wake. Even in those circumstances, there are medical decisions that need to be made. Some forms of treatment can slow the process of dying and extend life without restoring consciousness. Many people have expressed a fear of being in an ongoing coma without hope of recovery. They would prefer, in such circumstances, not to have life-extending treatments such as cardio-pulmonary resuscitation, a ventilator, or IV feeding. In practical application, it is less common for there to be such a clear cut sense of what the future holds. A person may be temporarily unconscious but no one knows whether or not that condition will become permanent. A health crisis can occur unexpectedly and a person can go from being awake and alert to unresponsive in a matter of seconds. Sometimes the way things have been imagined when drawing up a living will are not the way things unfold.

In addition to or instead of a living will, some people prefer to have a POLST document. POLST stands for Physician Orders for Life-Sustaining Treatment. POLST forms have a set of specific medical orders. POLST forms are filled out with a health care provider who signs the form as acknowledgement of the conversations held in preparing the form and understanding of the wishes of the patient. POLST forms are often created after diagnosis of a serious illness.

From my perspective, one of the most helpful advance directives is a durable power of attorney for health care decisions. Instead of stating what should happen in the event of incapacitation, it addresses the question of who should be in charge of decision-making. The durable power of attorney assumes that an individual will have conversations with family members in advance and make their general wishes known then trust that person or persons to make decisions in context when the situation arises. I am quite sure that I am not able to imagine all of the possible scenarios for the end of my life. I don’t know when it will come or what the circumstances might be. I do, however, know people I can trust to make decisions in context with love and care. I choose to have those difficult conversations with my family and trust them to make decisions. I am very fortunate to be surrounded by loving family members. Not everyone is so fortunate.

Not long ago a friend of mine, whom I have known since high school and who has retired from a career in nursing, posted a kind of advance directive on social media. It was not a legal document, but rather a sort of manifesto expressing his wishes. For this person, suppression of pain was a priority. He did not want life-extending treatment once his condition was determined to be terminal. He did, however, want maximum pain medication. He had no fear of being rendered unconscious by the medication. The statement was clear and easy to understand. I know, however, that he knows that posting such a statement on social media doesn’t establish a clear directive for medical providers. I hope that his loved ones have had conversations with him and are aware of his feelings.

I would not want a similar statement as a part of my personal advance directives. Having had an adverse reaction to pain medication in the past, I would prefer not to be rendered irrational or incapable of relationship with loved ones. My sense is that death is a singular experience. If possible, I’d like to be awake for it as much as possible. I have a fairly high tolerance of pain and it seems like enduring a bit of pain for the sake of a few more minutes of conversation with loved ones would be a good trade off. But I am not in chronic pain and I am imagining what it might be like. In the midst of a medical reality, I might change my mind.

I have been positively impressed by a set of physician orders for palliative care called Comfort Care Orders. My mother chose that course near the end of her life when she chose not to have a life-prolonging surgical procedure that was likely to leave her on a ventilator for the remainder of her life. The hospital setting where she died was very supportive of her and of us as family members who sat with her in the final stages of her life.

In the next few months, we will be reviewing our wills and advance directives as a bit of on-going updating and conversation with family members will be an important part of the process. I realize that I am now older than those giving me legal advice and providing medical treatment. My perspective is different than it was before Susan and I faced a very serious medical crisis. In our case we have been given full recovery and the opportunity to talk about what might happen in the future. It is a gift that not every family is given. I hope we can be responsible with that gift and choose wisely as we prepare advance directives that hold the possibility of easing the decision-making process when the time comes.

Dying, however, involves releasing control. I know that I will not be in charge of all of the decisions and giving orders to the end of my life. Realizing that I am surrounded by people I trust is important to me. Investing in and caring for those trusting relationships seems to me to be the most important bit of advance planning.