KEY POINTS-

  • Living wills can be unhelpful because they can't anticipate the infinite ways health needs develop.
  • Conversations with family or a proxy help avoid emotional chaos when there is a medical emergency.
  • The time to talk with each family member is when you are healthy and not in a state of crisis.

I recently posted a particularly important interview with Dr. Susan Block, professor of psychiatry and of medicine at Harvard, a renowned expert in the field of the intersection of psychiatry and cancer care, and author of more than 200 publications in this area. I was inspired to do a podcast on end-of-life care because, in a recent discussion of sibling estrangement, it was noted that the single-most-common cause of family fracture occurs over parental end-of-life issues, including medical decisions and inheritance squabbles.

 

Dr. Block noted that in 70 percent of cases, end-of-life medical decisions are made by proxies, family members who are designated to make health care decisions. Frequently, though, there has never been a meaningful discussion of what the patient’s own wishes are, leaving the family to guess, or even argue about decisions. Often, family members have sharply differing wishes about prolonging care in critical situations, but the real issue is what the ill person would have wanted if they could speak for themselves. Sometimes family members feel guilty for not prolonging life, but they may also feel guilty for subjecting their loved one to undue suffering. A meaningful conversation when the patient is not in a state of crisis relieves the family from guilt and anxiety and empowers them to carry out their loved one’s wishes.

 

Living wills have not been shown to improve end-of-life decision-making. The limitation of living wills is that it is impossible to predict the enormous and nuanced array of possible scenarios that may occur in a setting of grave illness. What has been shown to be most effective is having conversations with family members, preferably over a period of time, so that family can really understand the values, wishes, and fears of their loved one. While we all think that we will have plenty of time at the end of life to have these conversations, there are acute care crises that occur, such as aneurysm, stroke, heart attack, or accident, where there is no longer time for conversation, particularly with all family members. It is always best to begin talking about these concerns while your loved one—or you, yourself—are still healthy and in a calm state of mind.

 

Dr. Block shared seven points to cover when trying to understand a loved one’s health care wishes:

  1. What is their understanding of their current medical status? If there is misunderstanding, such as underestimating the seriousness of a current medical problem, the doctor can be asked to help the patient be better informed.
  2. How much information do you want about your health, and who in the family do you want this shared with? Some people are intensely private; others want the whole family to have information.
  3. If your health were to worsen, what are your most important goals? Some examples might be the following: to see a child graduate, to not go into the hospital, to be able to care for a pet, to take a trip, to finish a project.
  4. What are your fears, and what would you most like to avoid? For a heart or lung patient, it might be a feeling of suffocation. For a cancer patient, it may be pain. You can reassure your loved one that you will discuss these concerns with your health care team to make you as comfortable as possible.
  5. What abilities are so critical to your sense of well-being that you cannot imagine living without them? Dr. Block shared a poignant story about her father, who said that as long as he could eat chocolate ice cream and watch TV football he wanted to go on living, and that statement freed her up to make critical decisions about spinal cord surgery that he had to have.
  6. How much would you be willing to endure to get more time? All medical treatments have potential benefit but also may entail suffering. Often parents of young children will endure anything to get more time with their children, but an older patient with terminal and chronic health problems may wish to limit heroic interventions.
  7. How much does the rest of the family know about your wishes? This is key to avoiding family arguments. Too often, family members arrive one by one at the bedside of a dying loved one, sometimes second-guessing decisions that have been made and creating tension or even intense anger and mistrust. Ideally, a parent has one or more discussions with every family member of the family to avoid any confusion.
 

While some people are open to discussing their end-of-life issues, others are uncomfortable. A way to ease into the conversation is that if a friend or acquaintance is undergoing intensive medical care, you can gently probe your loved one’s feelings about what they would do in that situation. It is most important to remember that you have this conversation from a place of love and that one of the most caring things you can do is to care for someone well when they cannot make their own decisions.