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The Infinite Space Between Life and Death: 3 Case Reports from Raphy Rosen

Raphy‘s last account chronicled the bright side of living at TCC; the camaraderie and playfulness that at times exudes from the patients. This sunny reality is made much more exciting by the contrasting darkness of that to which it is opposed. While hospitals strive to cultivate health, they are inevitably overshadowed by illness and loss. In the limbo state that rests between serious illness and death presides a moment to make decisions, be it by doctors or loved ones. This is a difficult moment because it asks one to qualify the physical and spiritual state of a patient’s life. Raphy experienced many moments like these at TCC and has written a moving introduction and three case studies that deal with the choice between life and death.

13- A Grim Theoretical

There is no question that, in medicine, death is the enemy. Death is to be forestalled, obstructed, denied, battled and repelled at all costs. However, unlike a human adversary, defeat by the hands of this foe is certain. No one, not Teddy Ballgame, not Dolly the Sheep, not Juan Ponce de León[1], nobody has ever escaped death. In that sense, we are all really palliative patients from the moment we are born until the moment we die. The question that baffles society today is: when does better quality of life outweigh the value of prolonged life?

For the vast majority of medicine, this question is irrelevant. Let’s imagine for a moment that I go to visit my doctor for a cold that I develop during my days of Columbia-induced sleep deprivation. The doctor is not going to sit down , face me at eye level, and say in hushed, serious tones, “Raphy, let’s talk about your goals for this type of care.” There is obviously nothing to talk about. I just want to take some medicine, sleep a little, eat my mom’s chicken soup, and recover so that I can continue being the brilliant, attractive, humble person you see before you today.

Let’s change the scenario.[2] Instead, I want to buy some absurdly overpriced cereal, so I walk across Broadway to Morton Williams. On the way, I am hit by a taxi barreling along at three times the speed of sound. I am in a coma caused by bleeding in the brain. The doctor wants to operate to relieve the pressure in the hopes that I will eventually retain some cognitive functioning, though it is clear to anyone who is remotely honest that I will never be the same. I will probably never learn a page of Talmud again and I will certainly not be going to graduate school. But I will probably walk, smile, eat and, with effort, speak. Is it worth it? Most certainly. To me, it is worthwhile to endure the pain of the operation and recovery in order to gain an indefinite number of years of a happy, simple life.

Surely you can see where I am going with this.

What happens after 5 more years when I develop blindness and weakness secondary to the brain damage? You have a bed-ridden 26-year old Raphy who cannot read but can still listen to the radio and talk to family. This Raphy develops a huge pneumonia due to a severe Boston winter. Do you shoot him full of antibiotics and hope he bounces back? I think yes, but I am less sure.

Six months later, Raphy has lost what remained of his leaky memory. He has no clue who his friends are when they visit. He recognizes the voice of family members but does not really talk anymore. He now must have regular operations to remove fluid from his brain. These procedures leave him in visible pain, from which he has no respite. Eventually, the doctor prescribes methadone which removes the pain but leaves him basically unresponsive. He can still swallow food but that is about all he can do. The doctor wants to know whether he should continue draining the fluid from Raphy’s brain. What are the medical benefits and what are the risks? What are your goals for this type of care? Obviously, if the fluid is not drained, the bleeding will eventually crush his brain and his breathing will stop. On the other hand, the expenses of the operations are immense and cause much discomfort. What now?

Obviously, this case was contrived by me and I actually have no idea if it makes even the vaguest medical sense, since that is not the point of the story. The point of the story is to avoid Morton Williams.

Just kidding. The point of the story is that, at a certain point, one must ask what the goals of care are, especially when the value of prolonging life seems dubious at best and downright torture at worst.

There is no point in you listening to morbid cases invented by me, when I can tell you 3 true stories that will make my point much more effectively. Each case demonstrates a different balance between aggressive life-extending care and palliative comfort care. While I obviously have my own biases as to how well each case was handled, I will try to present them in an objective way so that you can render your own judgment. Names are changed, as always, to protect privacy.

The first case is that of Enrique Valdez. Enrique had lived with advanced dementia for many years now and had been cared for by his diligent wife, Raquel. They lived in their apartment in Manhattan until Enrique developed a urinary tract infection that left him immobilized, vomiting and agitated. He went to a hospital ICU where the infection was treated and his condition stabilized. One ICU doctor sat down with the family and explained the principles of palliative care; that the goal was not to hasten death but to allow a person to live out his or her life in the maximum possible comfort. The family was quite taken with this style of care and decided that they wanted a facility in which Enrique could receive palliative care. The family heard about TCC’s impressive palliative program and Enrique became a patient.

The family immediately made very clear that they wanted comfort measures only for Enrique. Raquel, Enrique’s health care proxy, put in place the advanced directives “Do Not Resuscitate”, “Do Not Intubate”, “Do Not Hospitalize”, “Do Not Give Artificial Nutrition/Hydration” at once. During his first month at TCC, his ADLs (Activities of Daily Living) declined. One morning, when Raquel was trying to feed him, Enrique vomited copiously. It is unclear what happened next. The wife and the doctor each claim that the other one panicked and demanded that Enrique be sent to the hospital, despite his Do Not Hospitalize order. In the end, Enrique was transferred to Mount Sinai Hospital against his recorded directives. He and Raquel sat all day in the hospital but there was nothing that they could do for him so they sent him back to TCC. Enrique’s daughter Angela arrived the next day from Atlanta. She and Raquel were livid that the facility disobeyed their explicit advanced directive and that they sat pointlessly in the hospital only to be sent back.

Enrique was placed on the TCC End-Of-Life protocol, which entails specialized pain management, extra social services and pastoral care visitation, conversation about Advanced Directives, bereavement and coping. Angela and Raquel sat in TCC most of every day to say goodbyes to Enrique. They played him his favorite classical music and read to him from books he enjoyed. All of the evidence suggested that Mr. Valdez would die imminently.

Yet, Mr. Valdez did not die, not right then at least. He continued to eat and to drink and his condition stabilized again. His family was somewhat at a loss for how to take this. They had taken the time out of their schedule to come be with dad at the end of his life and now it was not clear that death was immediately in the cards. In the end, they decided to stop feeding Enrique orally. He may have been an aspiration risk and so to avoid developing pneumonia they stopped feeding him entirely. I stood by his bedside as he pleaded in his raspy voice for water and Raquel looked sadly at Angela who said “Mom, you know he is not supposed to be drinking”. They gave him enough water to wet his mouth and keep him comfortable, but not more. He received regular doses of extra strength Tylenol and Morphine as needed to ease his agitation. After about five days of no food and little hydration, Enrique died.

Mr. Phillip Siegel is a blind geriatric patient with metastatic colon cancer. His prognosis is quite grim, but he has yet to succumb to the disease. Every few months his blood hemoglobin falls precipitously due to bleeding in the stool and his cognition declines with it. His wife, Ellen is his health care proxy though she refuses to make decisions for her husband and instead delegates them to her daughter, Marissa. Marissa insisted that her father continue to receive blood transfusions at the hospital. When the phlebotomist tried to draw bloods to see Mr. Siegel’s hemoglobin levels he flatly refused to let them. Every time they wanted to check his levels or transfuse him, the staff had to call Ellen or Marissa and put them on the phone as they cajoled Phillip into letting them continue the procedure.

I sat in on a floor meeting in which the staff tried to convince the Siegel family that it is medically futile and, in fact, immoral to continue to force Phillip to be transfused since it is clearly very painful for him and he has stated quite plainly that he does not want these interventions. They pointed out that they could alleviate any pain and he would be comfortable and cognizant until the end. He would be able to die in his bed at TCC surrounded by staff he knows and who care about him. As the nurses and social workers made their case, it was obvious that Ellen was wavering and was unsure of what she wanted. But Marissa was adamant. She berated the staff for what she said amounted to physician-assisted suicide. Sure, she knows that her father was going to die in the near future, but to allow him to simply die from lack of blood oxygen was tantamount to murder. She insisted that her father was not in his correct state of mind and that his refusals to allow transfusion were simply because he could not understand the severity of his condition.

In the end, they reached a compromise. Since Marissa was the one who was most insistent that her father be transfused, she would come in every week to coerce her father in person to allow them to draw bloods. The nurses were sure that after a few weeks Marissa would realize that her father truly did not want this aggressive care and would have been much happier being left to die in peace. But Marissa did not give up. She has come in every week since early July and Mr. Siegel is still living against his will.

Ms. Sylvia Lorraine came to the Huntington’s Disease ward of TCC in 1992. Sylvia was 24 when she arrived and is to date the youngest person ever to be admitted to the HD unit. When she was younger she was a child model and was prom queen in her high school class. As I write this post I am staring at old pictures from her early days at TCC that the recreational therapist showed me. She had short brown hair, pink lipstick and a classic girly pout on her face. She was indeed quite beautiful. She spent more than 15 years on the HD unit, getting progressively worse as the disease took its inexorable course. She eventually became wheelchair-bound and her arms and face grew contorted and twisted. In the past year she developed breathing and swallowing difficulty and was transferred to a unit that specializes in tracheotomies. She had a gastric tube inserted because her chorea made her an aspiration risk while swallowing food.

Sylvia was stable in this condition for about a year before one day in late July her condition worsened dramatically. Her gastric tube became dislodged and the surrounding area began to hemorrhage. Her breathing became rapid and shallow and she was in obvious pain. I was about to leave work for the day when the director called me and said “Raphy, you can’t leave yet, we need to go see Ms. Lorraine.” I do not know what medical intuition guided him, but our timing was perfect. Just as we walk into her room, we were followed in by her foster mother and brother who had just arrived. Her mother was coincidently in the area for a family gathering and had rushed to TCC when she heard that Sylvia was deteriorating. Sylvia’s family was clearly devastated but seemed fairly composed since they knew for many years that this day was bound to come. Sylvia had a Do Not Hospitalize order in place and the family intended to abide by it. They kept saying how sweet and beautiful Sylvia used to be and that we cannot understand since we did not know her in her youth. The director called the evening staff together and told them that this would probably be Sylvia’s last night on this earth. They were all extremely solicitous to the family and offered them dinner and a place to sleep if they wanted to stay the night.

The next day in morning meeting one of the nurses announced that Ms. Sylvia Lorraine had died in her bed at midnight. The reverend and the rabbi had both gone to see her and pray and reported that she was quite peaceful and even smiled faintly at their touch. The nurses and aides on the HD unit that had cared tirelessly for Sylvia for so many years had a chance to pay their final respects. Many attended her funeral the next day.

Each of these cases depicts a family giving a different style of care to their loved one. How can I judge their decisions having never stood in their shoes? To me, it seemed that the Valdez family may have accelerated their father toward his demise prematurely while the Siegels represent the opposite extreme of intense devotion to the point that they are forcing a life of torment on their loved one. I do feel that I understand a decision like the Siegels, however. When I look at Phillip Siegel, I see a shadow of a man. He looks emaciated, wasted and tired. This is the only Phillip Siegel I have ever seen and the only one that any staff member at TCC has encountered. Yet, when his wife or daughter looks at him, they see his former self. They remember a vibrant young man full of life and optimism. It is this memory that they are clinging to more than his current condition. I think that bridging this gap, appreciating the wonderful past while acknowledging the tragic present is essential in resolving conflicts around the end of life.

[1] Google him.

[2] If you are squeamish, or believe in the power of the “evil eye” skip the next 3 paragraphs.

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susan sandler, R.D.
susan sandler, R.D.
13 years ago

I was Ms. Lorraine’s dietitian who kept her off tube for more than 5 years. It is an interesting story. Contact me if you’d like to hear it.