Medicine From The Trenches

Experiences from undergradute, graduate school, medical school, residency and beyond.

The Importance of Saying Goodbye

Introduction

I was consulted to place a chemotherapy port in a young man (age 14) who was going to need extensive chemotherapy in the coming weeks. These requests are not unusual but the lessons that I learned from my experience with this young man are with me today, years later. This was one of my earliest experiences as a newly minted attending physician. My learning curve at that point was so steep that I constantly risked falling backwards as I climbed.

Roger

Roger was a patient in the Pediatric Intensive Care Unit (PICU). He had recently been diagnosed with a fairly aggressive tumor that grew from his liver and pushed on his diaphragm. His presenting complaint has been shoulder pain for which he was worked up extensively. Since Rog, as he asked me to address him, was a volleyball player, the first thoughts were a hidden musculoskeletal shoulder injury but it became obvious as the workup proceeded, that something else caused Rog’s pain. The tumor was identified, biopsied and deemed inoperable as the malignancy had quickly spread throughout his liver. Thus pediatric oncology consulted me to place a port for chemotherapy.

Rog’s parents were adamant that they did not want staff to discuss Rog’s diagnosis (or grim prognosis) with Rog. They wanted no mention of cancer, metastatic disease or death with the patient. Since Rog was 14 years old, his parents wishes were followed by PICU staff whether they agreed with the parents or not. I spoke with Rog and his parents at the same time when I approached them for consent to place the port. Rog knew that he would need extensive intravenous medications over an extended period of time thus having a semi-permanent port would mean the there would be no repeated searches for a vein or multiple punctures if a vein was missed. I explained that I would place the port in the operating room with him practically asleep but definitely fully relaxed. He was fine with the procedure and his parents agreed. The next afternoon, I placed the port without problems.

Off and on over the next couple of weeks, Rog received his daily chemo and medications to mitigate the effects of the chemo. I watched a very athletic young gentleman begin to become frail, thin and jaundiced (yellow tint to skin).  His very lively team mates who came to visit were a stark contrast to the patient who seemed to age before my eyes. I stopped in to say hello to Rog often because we had enjoyed some lacrosse stories together previously. I also always greeted his parents who began to look more desperate with each day of chemo. I was sure that Rog, who was a very astute and sensitive young man, could see the changes in his parents even if they didn’t discuss his disease with him.  Rog’s 8-year-old brother often sat in the waiting room after school for a few minutes with his adored older brother. Charlie was a quite young man with sparkling dark eyes behind round wire-framed glasses and endless dark curly hair.

I always made it a point to ask Charlie about his scene. Charlie loved discussing flying with me and looking at photos of my little twin-engine Cessna plane. “Do you really fly above the clouds?”, he would ask with wider eyes. “Yes, I do get up there at times and I fly through them too but most of the time, I am beneath them, ” I would answer. “What you think is happening to Rog?”, I asked him one day. He said that the knew his brother was very sick and he was glad that he could wait outside in the waiting room because he didn’t like seeing his brother look so sick. He said that he was luckier than Rog because he wasn’t sick. Charlie wasn’t sick but he missed his brother and his world was forever changed by his brother’s sudden illness. Charlie missed his brother very much.

One of the PICU nurses who had also become very close to Rog, stopped by his room when her shift began and ended. She had been a flight attendant in her previous life; sunny smile, soothing voice and the stuff of a 14-year-old man’s dreams. She told us that Rog was worried about his little brother. She said that he wanted to say good bye to his family and brother but his mother wouldn’t let him say anything. She changed the subject when he brought it up. Rog’s favorite nurse decided to get a video camera and allow Rog to speak to his parents and little brother. She said that she didn’t know if she would end up fired from her job but it was clear that this young man knew he was dying and longed to say good by to those he loved. Shortly after Rog filmed his messages to his parents and his brother, he died.

As far as I know, no staff member discussed death or dying with Rog but he knew that he was not going to survive this illness. He didn’t have to be told by his parents. A couple of weeks after Rog died, Rog’s favorite nurse gave Rog’s parents the video tape. They were very grateful to have his last messages. Those precious words were a gift to the people that Rog loved most. Later in PICU rounds, we took the time to allow anyone involved in Rog’s care to speak about their experience with his case. The underlying messages from the fellows, the residents, the nurses and other caregivers was that not discussing Rog’s impending death with him sort of negated the feelings that we all knew Rog experienced. Rog knew that he was dying and desperately wanted to say goodbye to the people who meant the most in his life.

We have to learn to say goodbye

I am not going to criticize Rog’s parents. Their grief began when they were informed of the grave nature of their son’s disease.  Even my own grief in the loss of my husband came suddenly. He was healthy and with me one day and he was gone on the next day. I didn’t have an opportunity to say goodbye to him. Even today, I am still dealing with my feelings surrounding his death but my experience with losing someone that I loved very much has given me even more compassion for those who are losing loved ones. Dealing with grief and loss is individual and very complicated. When dealing with a prolonged illness, a patient with extensive burns, a major trauma or even a chronically ill loved one, part of my duty to the patient is to take care of their caregivers and in some cases, help them say goodbye to their loved one which starts the healing process for all of us.

Parents who are losing children and children who are losing parents know about death and often want to discuss their feelings surrounding their loved ones illness. In many cases, just listening to what they have to say without judgment is a very powerful act that can benefit both the patient and their family. As physicians, we want to attempt to solve every problem and move on but in the case of critically burned patient or a patient with a limited prognosis, we can’t solve the problem of making everything the way it was before the illness. Even for many physicians, dealing with survivors in these types of cases can result in us bringing those feelings of helplessness home where they can cause problems with our personal relationships.

I make sure to allow staff and family to openly discuss their feelings surrounding a critical patient’s illness. By having a safe place to discuss feelings of helplessness, anger and frustration can allow those feelings to be acknowledged. The simple act of acknowledging one’s feelings about a sad or tragic situation rather than attempting to hide them behind a professional mask. Sometimes as a physician, I have to cry with my patients (families) and pray with my patients (families) which is the best of humanity that I can give them. I can now do that with the staff too because we are as human as our patients. To pretend that Rog’s situation above was not gut-wrenching would have been dishonest because 14-year-old volleyball players are supposed to be worrying about acne and the prom; not worrying about how to say goodby to their parents and little brother because they know they are dying. Rog understood his death in the simplest terms and simply wanted to leave something behind.

Medicine in Today’s World

In today’s world of having to rush through patient encounters and get to the bottom of a diagnosis quickly so that one can move onto the next patient, we cannot lose our humanity. Our patients have much to share with us and as physicians, we are fortunate enough to be in a position to hear what our patients have to say. It is my belief that the profit-driven/cost-cutting world of medicine today where physicians are “burning out” and “dropping out” of medicine because of low job satisfaction is directly due to our loss of connections with our patients. It takes time and a willingness to spend time reaching our patients and their families. In the end, our “gallows humor” doesn’t make for us dealing with tragedy in a healthy manner as physicians are notorious for turning to alcohol and other substances or just repressing those feelings only to have them come out later and pathological for us.  Reversing the trend to spend less time with our patients is probably the best thing that we can do for ourselves as physicians.

I am also convinced that getting back to our humanity and our spirituality in medicine is vital for us as physicians. If we do not care for ourselves spiritually and emotionally, we are likely not going to meet the needs of our patients clinically. Medicine cannot be done by a computer or with “check lists” or pre-written forms. Medicine is done best human being to human being with ourselves open and listening carefully to what our patients have to teach us so that we can help them.

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2 August, 2015 - Posted by | medicine, practice of medicine | , ,

2 Comments »

  1. This is a really touching story. I can relate to the importance of saying goodbye having lost my father following a car accident when I was 5 years old. Thank you sharing this beautiful but sad story. It reminds me to be grateful for every day that I spend with those I love.

    Comment by Malaika | 2 August, 2015 | Reply

  2. Beautiful! Thank you for sharing Doc

    Comment by sw | 2 August, 2015 | Reply


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