Let’s talk about the process of dying, and especially your wishes for end-of-life care.
Some people have already stopped reading. They believe that they are too busy living to talk about their end-of-life wishes.
It would be great if we could delay “the conversation” about end-of-life matters until the day before we suffer a sudden and massive stroke or are seriously injured in an accident. But having a timely family conversation can be as important as the talk that might have occurred decades earlier between parents and teenagers about “the birds and bees.” Although the topics are difficult, both are necessary and are about the quality of life.
UPMC Pinnacle Carlisle will be hosting a free dinner on Wednesday, April 4, in relation to showing a documentary “Considering the Conversation” and/or playing “Hello,” which is described as a fun and interactive game to encourage people to express opinions about “living and dying well.” Co-sponsors of the event are the Partnership for Better Health and Hospice of Central Pennsylvania.
At Keystone Elder Law, we consider an advance care directive to be a “foundational document.” We believe that the advance care directive is so vital that we will not accept an assignment to prepare a last will and testament unless an advance care directive is already in place or is part of the assignment. Our advance care directive includes both a durable health care power of attorney and a living will.
Whenever possible, the attending physician prefers to speak to the patient about health care. Only when the physician believes that the patient is either permanently unconscious or has an irreversible and end-stage medical condition, may a physician consult the patient’s agent for direction about whether life-sustaining treatment should be continued or ended.
Examples of end-of-life decisions made by an agent could include: withholding or withdrawing medical care; withholding or withdrawing food or water that is medically supplied to the patient by a tube; or requesting the physician to issue a do-not-resuscitate (DNR) order.
The advance directive we use closely parallels the Commonwealth’s baseline format, which is found in 20 Pa.C.S. § 5471. This advance directive includes an opportunity for the patient to initial or otherwise comment, as to whether specific treatment is desired at an end-of-life situation.
It is important for us to remind our clients that, as long as they are able to communicate, what is on the form is not as important as what they tell the physician. The directions of the living will within the advance directive are for when the patient is no longer able to communicate desires personally to the physician.
I advise our clients that there are two parts of the advance directive that are most important. First of all, who is the agent? Secondly, there is an opportunity to declare whether a health care agent must follow the client/patient’s instructions, or whether the instructions are only guidance, in which case the health care agent has final say and may override any of the client’s instructions.
Over the years, attending physicians who serve nursing homes and other facilities where end-of-life decisions occur frequently have emphasized to me the importance of making sure not only that a patient has a living will, but also that the family understands what is intended.
When a living will names multiple family members as co-agents, and emotional disagreement is occurring within the family, the attending physician’s concern to be compassionate can be frustrated. For this reason, we normally recommend that the appointment of a single agent can be better than appointment of multiple agents. If multiple agents are listed, and the word “or” is used between the agents’ names instead of the word “and,” then the physician has optional agents and does not need to have unanimous consent.
Clients are best advised to pick an agent whose judgment they respect. Then the client may indicate that the comments on the advance direction are not binding on the agent but are offered only as guidance to the agent.
In this way, the agent has the clear authority to provide direction. In the event of an end-of-life situation where differences of opinion could be possible, there is no need to ask a lawyer or an ethics committee to review the advance directive in order to determine what the patient probably would have wanted if he or she had been able to communicate.
One example of an unclear end-of-life situation is a stroke victim who would certainly die if a temporary feeding tube inserted through the nose is not used. What if the advance directive indicated a general preference for “no feeding tubes,” but the attending physician would suggest that the temporary measure could restore some quality of life?
If the agent has clear authority and has had previous conversation with the patient, the agent will be prepared to make a decision that best responds to these exceptional circumstances, even if the answer is to reject the temporary tube after considering that option.
Some people have been critical of the approach to give the agent discretion and control, saying that doing so makes all the other commentary a waste of time and not worth the paper it is printed on.
I will concede that nine pages might be a waste of paper to appoint an agent and declare that agent to have the final authority. However, what is important about the signing of an advance directive is the conversation within the family that occurs while the details of the advance directive are being explained and considered. We encourage not only the agent to be present when the advance directive is signed, but we also give an opportunity for other family members to be present by phone or by video conferencing.
The April 4 dinner is an opportunity for you to learn more about how to have a conversation with your loved one about the end-of-life experience. Reservations are required and can be made by contacting Hospice of Central Pennsylvania at email@example.com, visiting www.hospiceofcentralpa.org or by calling 717-732-1000.