This is the Reason a Humbling End-Of-Life Conversation Makes Me Grateful

This was a unique end-of-life scenario, at least in my experience.

Our Thursday morning Head and Neck Cancer Clinic had been busy, as usual. It was a particularly optimistic day, with most of the patients being follow-up patients in remission. The new patients that morning, being evaluated for recently diagnosed cancers, all had very treatable disease.

Our last patient of the day, however, was a wonderful man who had extensive skin cancer that eroded into bone, including the skull bone, and it had recurred in spite of multiple treatment modalities. At this point, this was end-stage, or terminal, cancer.

This gentleman had been coming to our clinic monthly, accompanied by at least one of his sons each time. As the cancer grew, it caused ulcerations that we tended to so that infection would not occur.  The patient was living alone at his request, but with excellent familial support. This was a strong man, a WWII veteran, who in fact had incurred excessive sun exposure during the war and was now succumbing to the skin cancers that such exposure had produced.

More Than Just Medical Consultations

Over the last few monthly visits, it was quite clear that the cancer was progressing. In terms of the physical manifestations of the disease, each visit with our clinic was really just an observation session, noting the extent of disease without doing anything more than recommending continued application of antibiotic ointment to keep the area clean. There were times when I felt bad about having the patient come in each month, as his status became more frail. I did not want these appointments to be a burden to him and to his family, particularly in the patient’s last stages of life.

However, such visits are far more holistic than just the physical exam. These visits were about support, about being there for the patient and the family. These visits were as much for the patient’s sons as for the patient. We were watching this man gradually end his life, and we were helping him do this with dignity.

Yet there was more to this, something I sensed early on but that became very obvious to me at this particular visit. This time, the patient’s son came in, but not the patient. The patient had become more frail and was beginning to fail at home. He was having more trouble taking care of himself, and his sons were recognizing that he was really struggling. We had previously had discussions with the patient about his end-of-life wishes. He had signed the MOLST form (Medical Orders for Life Sustaining Treatment) and indicated he did not want to be resuscitated in the case of cardiac arrest.

Discussions about the stage prior to death, when he would be unable to care for himself, had been a bit limited. Not for lack of trying, but simply because when these were brought up, my patient was firm in his desire to live alone and care for himself. We were now, however, at the point where he could no longer do so.

Preparing for Hospice Care

This visit, therefore, was an opportunity for his son and me to lay out the plans for hospice. We took care of the paperwork, made the necessary arrangements, and submitted the orders. But the key parts of this discussion were twofold: First, I was assuring his son that he was doing the right thing. I had sensed that this patient’s wonderful and attentive family needed to know that there is a point at which the use of external support measures is fine.

There does not need to be guilt or a sense of failure or abandonment. Too often, I see patients and families struggling with the idea that hospice is giving up, losing hope, and giving in to cancer. Such decisions are really positive ones, dedicated to allowing patients with terminal illness to live out their lives with comfort and dignity.

For the families, it is important for those who support them to recognize that these decisions are difficult and require empathy and support.

Delivering a Compassionate Recommendation via Video

The second part of this visit was the part that fascinated and, frankly, humbled me. Although my patient was not present, he was the center of the discussion. A man who in my mind was a WWII hero in the Pacific Theater, and who brought great joy to me each time I saw him, my patient was also a man who had a tremendous respect for authority. His son expressed this to me and then said, “My father wants to know that you recommended that he go into hospice. He wants you, a person of authority, to tell him it is the right thing to do.”

At this point, I indicated that I certainly recommended hospice for him. His son then brought out his phone and said, “I would like to video you and have you give this message directly to my father.” I gladly did so, engaging in a conversation with my patient as if he were in the room, explaining that going into hospice was the correct decision, the decision I strongly recommended. His son left with the video message, and I realized my video would be last conversation I would have with my patient.

End Of Life Issues Are Complicated 

End-of-life issues are extremely complicated. There are so many facets we need to consider and address. There are always unique situations and challenges. But this particular experience brought to light something I too often forget – there are times when we, as patients, families, and medical professionals, need to realize that it is fine to let go, and to allow someone to die.

It is hard to not feel guilty or to not feel a sense of failure, but we must rise above these emotions and, instead, realize the benefits of guiding our loved one, our patient, gracefully through those final stages of life. And it is beneficial to assess the many supports that are available to us. Palliative care experts have extraordinary adeptness in navigating these difficult waters with us.

Too often, we equate letting someone go with wanting them to die. Of course, this could not be further from the truth. Instead, we should equate letting someone go with wanting them to die with dignity, with the support of friends, family, and caretakers, and with the compassion that is a celebration of their life and a testimony to what it has meant to us.

 

Arthur M. Lauretano, MD, MS, FACS

12/11/16

 

My book, Do the Right Thing: A Surgeon’s Approach To Life is now available on Amazon! Read an excerpt here. 

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photo courtesy of Unsplash