The Importance of Difficult Conversations

I have worked with Mr. P. for the past three years. Like many older adults, he lives with multiple chronic medical conditions, including diabetes and dementia. He is no longer able to walk or transfer without being lifted and is fortunate to live at home with a 24-hour, live-in caregiver. He was hospitalized approximately 20 times over a five year period and I am happy to say that he’s had just one hospitalization in the past year.

As Mr. P.’s health has declined, I’ve participated in and facilitated multiple discussions between his two sons, his primary care physician and specialist physicians. Because of his continuously declining cognitive status, Mr. P. has not been able to actively participate in such discussions. Instead, his sons are forced to guess what their dad would want. This is not an easy position in which to be placed.

At this point, in his medical record and in his home, he has a DNR (Do Not Resuscitate) order documented along with a DNI (Do Not Intubate) order. This means that if his heart stopped beating, efforts would not be made to restart it and if he stopped breathing, he would not have a tube inserted and be placed on a respirator. He does not have a DNH (Do Not Hospitalize) status because his family would like him to be treated and hospitalized if he can recover from an illness.

DNR, DNI and DNH terminology is second nature to health care professionals. For many families, however, these are not understood or in place, thereby often requiring quick decisions during a time of crisis. Not knowing the desires and intentions of the sick person in question can make these decisions all the more difficult and heart wrenching.

New Developments for Mr. P.

Recent developments in Mr. P.’s health led to a surgical evaluation resulting in a recommendation to amputate an extremity. His children weighed the benefits and risks of doing the procedure and agreed to move forward. Unfortunately, it was not that simple. Prior to performing the surgical procedure, the physician requested that Mr. P. undergo a non-invasive diagnostic test that would provide additional information about his healing ability. Knowing Mr. P., I knew that the positioning required for the test would be very difficult for him to endure.

I provide this example to make the point that as care partners who have responsibility for making health care decisions for a loved one, it is not just one decision we may need to make about end of life. Rather, it is a series of incremental decisions that must be made, sometimes over the course of many years.

Creating a context for future decisions

In my case, and as the only child of parents who are 79 and 80 years old, I have taken on the responsibility of being the alternate health care proxy for each of them. To ensure that this goes as smoothly as possible, we have had a number of discussions regarding their desires related to future care.

Here are some suggestions for having these discussions within your own family:

  • Create the opportunity. Assess your family situation and commit to involving all those necessary in having a frank conversation about end-of-life issues.
  • Choose the time. The sooner you can have these conversations the better. In particular, it’s best to have these when your loved one is still relatively healthy and able to participate in the decision making.
  • Prepare. Use the starter kit from The Conversation Project (see sidebar below) to prepare for the conversation.
  • Be specific. The more you understand about the specific wishes of your loved one, the more comfortable you’ll be in making critical decisions later, when this person may be unable to speak for themselves. For example, your mom may say that she wants to die at home, surrounded by loved ones. Your dad, on the other hand, might say that he doesn’t want to burden his children with physical care and, therefore, prefers being in a facility.

    I had a 98-year-old client who told me she did not want to be resuscitated if her heart stopped or intubated if she stopped breathing. But, she also said that she absolutely wanted to be hospitalized if she could be treated and recover from an illness, because her goal was to live to be 100. And, eventually, she wanted to die at home with her long-term caregiver present, classical music playing and fresh flowers nearby. Another gentleman relayed that he never, ever, wanted to spend time in a hospital setting again.

    Needless to say, and absent a specific discussion on the topic, it’s unlikely that this level of precision regarding a loved one’s wishes would ever be achieved.

  • Get your documents in order. Be sure a health care proxy and durable power of attorney are in place and make multiple copies of the documents. The health care proxy should be on file with your primary care physician and a copy easily accessible in the event of a hospitalization. (In my experience, you cannot depend on having given one to a local hospital and expect it to be on file for the next admission.)
  • Revisit the topic periodically. Sometimes, as someone’s health status changes, their decisions change as well. The 98-year-old woman mentioned above reached a point, after several difficult and painful hospitalizations, where she decided that she never wanted to be hospitalized again.

Remember as you spend time with family members this season, that one of the greatest gifts we can give to each other is open and honest communication about end of life matters. Leaving everyone with the knowledge that these important issues have been addressed is a wonderful way to begin the new year.