Tips on talking about the end of life

Discussing goals of care, often in the context of a life-threatening illness, is an inevitable part of the day-to-day life of hospitalists, but most physicians receive no formal training in how to do this. We see so many variations in the style, depth, and attitudes of these communications.

Of course, families vary as well in their expectations and disappointments during these talks. It is interesting how “life” means such different things to different people. To some, if they can blink and communicate, that is acceptable, and they want to keep going, but for others, that is not an acceptable quality of life. People will have very individual perspectives on this issue. For example, a patient once told me, “If I cannot give and receive love anymore, I do not want to be alive.”

As a physician, I wonder, if my mental faculties ceased to exist, would I want to go on? It is one thing to talk about death when it is only an abstract concept and I can think rationally about it. But when death is in the room with me and my loved ones and no longer a hypothetical concept, would I be ready to go? The fear of letting go of life and loved ones would be sure to complicate some choices that currently seem simple.

As doctors, we should seek to accept a wide range of perspectives. We often see patients and families go back and forth on their goals of care, and health care staff often get frustrated because revoking a code status can lead to significant changes in the treatment plan.

We should strive to show more empathy and support to these patients and families. To do so, it may be helpful to explore more deeply who the patient is as a person and what they value. Then you can more readily help them untangle the perplexities of the end of life.

A good start is to be transparent and honest in your discussions. Sometimes physicians feel uncomfortable saying there is nothing more that can be done. However, when families trust us with the care of their loved ones, it is only fair to them that we convey information without any ambiguity.

Together, physicians, patients, and families should seriously consider whether care is beneficially prolonging life or if the balance has tipped and we are only prolonging suffering and the inevitable. It may also give us a different outlook if we view families as an integral part of the medical team. Phrasing it that way can also give them a sense of empowerment and responsibility in the decision-making process.

Another very crucial aspect of this is the way we question patients and families about their goals of care and do-not-resuscitate (DNR) status. A physician might say, “So, if your mother has a cardiac arrest, you don't want us to do CPR and attempt to revive her?” The way this is phrased may make the person feel that they are taking away something from their loved one, and thus, they often feel compelled to say, “Do everything.”

But what if we frame it this way: “Your mother is of advanced age and has multiple diseases that she has been battling. If her heart were to stop, would you prefer she go in peace and dignity? We can offer her comfort care, closure with family and friends, and the dignity that she deserves at the end of life.”

This sounds more like we are “offering” something, which is true! Even for a dying patient, medicine still has something very valuable to offer—comfort. Perhaps the term DNR should be changed to “allow natural death,” as that sounds more reasonable and appropriate.

It may also be worthwhile to bring up the patient's preferred place of death. Would they want to pass away peacefully in the comfort of their home surrounded by their loved ones or in a hospital bed? Once the patient gets too unstable for transport, they unfortunately cannot make it home. Addressing these details lets the patient and family know that you truly care about their end-of-life journey.

What shouldn't we expect from these efforts? That the discussion will yield results right away. Unless it is an emergency or the patient or family knows exactly what they want, it's important to allow them time to think and then get back to you with answers. These questions are often resolved through a series of discussions rather than with a single conversation. Time and patience are your friends.

By having conversations this way and showing empathy and understanding, we can better facilitate code-status discussions, and regardless of what the family decides, they will hopefully realize that their physician is attuned to their needs and quandaries.

I had a patient with amyotrophic lateral sclerosis who was bedbound with a tracheostomy and percutaneous endoscopic gastrostomy tube for nine years. She would communicate with blinking. We were treating her for Pseudomonas pneumonia that was resistant to carbapenems and ceftazidime. She had multiple pneumonias during that hospitalization. Her husband told me that he wanted to see if she was better tomorrow.

As I told him, I could only think that today might be the best day she would have. But I also noted that it is of course that hope for tomorrow that keeps us going. With so many advancements in medicine, one would think that we would have the ability to use these interventions to limit the suffering of the dying process, but more often than not, we resort to them only to prolong the inevitable.

I told him that I understood that we were not ready to let her go, but would we ever be ready before her condition got to an unbearable point? With this conversation, I acknowledged the dilemmas the husband was facing, so that he felt connected to me and knew I had their best interests in mind.

I never shy away from discussing these philosophies with patients and families. It allows them to see me beyond my white coat and for me to see them beyond the hospital gown. Being part of a person's end-of-life journey and comforting them through it is not only our duty, but also a privilege. The onus is on us to bring our best so that we can do justice to this responsibility.