The Four Reasons

On a daily basis in physicians’ practices discussions regarding initiation, continuance, or withdrawal of care occur. While these can happen a physician’s office, not infrequently the more intense discussions occur in the hospital where there can be a pressing immediacy to arrive at a crucial decision. When a patient-doctor relationship has been on a long term basis that discussion, while potentially difficult, has a foundation of trust which can prove to be invaluable to both patients, their families and physicians. Unfortunately consultants and hospitalists (hospital based physicians) often do not have the luxury of having that relationship. We meet the patient and/or family for the first time and begin to hash out a diagnostic and therapeutic game plan. It is especially challenging in the world of critical care medicine as stresses and uncertainty can be high on both sides to begin with as the patient’s life is often in the balance. That needed foundation of trust must develop quickly regarding recommendations pertaining to initiation, continuance, or withdrawal of care. Decisions regarding any of them can be difficult, especially the last. Over my career I’ve come to appreciate that, at least in my own mind’s eye, there are four basic reasons that influence any particular decision by patient or family (or proxy) especially regarding withdrawal of care. While not mutually exclusive those reasons, along with some examples, are as follows:

LOVE I think the most common reason of all. The patient wants to do right to themselves but also family. Family wants to do right by the patient and themselves.

Consider the following: As a first year (1980) medical resident on call I was urgently summoned to the bedside of a man who had cancer metastatic to bone and lung. He was beginning to experience respiratory distress which, if it continued, would require transfer to the ICU, intubation, and initiation of mechanical ventilation. While arrangements were being made I was told by nursing that a rather large contingent of family were in the waiting room and wanted to speak to the doctor. As the attending physician had not yet arrived from home I was “the doctor.” Inwardly shaking as I was new to this side of medicine, I introduced myself to the family consisting of several brothers and their spouses and the patient’s wife. I explained the current situation regarding the patient and the plan to move him to the ICU. “Do what you need to do,” said one of the brothers in a firm voice with several others murmuring their assent. There was a moment of silence and then, in a very forceful tone, a voice cried, “DON’T YOU DARE!!” It was the patient’s wife who then explained that the patient had been in excruciating pain for weeks, only getting worse despite increasing analgesics, but “hung on” primarily for the benefit of family. My attending, who knew the patient quite well, by this time had arrived, concurred with the wife, and the transfer was stopped. (The family had also agreed to the final decision). So I present this as an example of love from several different perspectives and the influence it can have on medical decision making. It is also an example of how a long term patient-doctor relationship can defuse a potentially contentious situation.

GUILT One of those niggling little concerns that occupies a niche in the back of the mind of a physician is the unexpected arrival of a distant relative of the patient who, while “distant”, is still part of the family and wants to be part of the medical decision making. This is not as uncommon as one may think. It arises usually in the scenario of a patient who is critically ill, highly unlikely to survive, and with whom family discussions have been ongoing, especially regarding prognosis and increasing considerations for withdrawal of aggressive care while still providing comfort care.

Consider the following: At one time I cared for an elderly individual who had developed a severe pneumonia leading to respiratory failure, intubation, and mechanical ventilation. Her condition gradually became worse and organs began to fail. It was becoming obvious to me and to family members that recovery was highly unlikely and there were daily discussions regarding the advisability of withdrawing aggressive care while maintaining patient comfort. The family had been wrestling with this decision but was slowly coming to grips with the situation. They wanted to be sure that all family members were in agreement “to let her go” as long as comfort was maintained. Enter the distant relative, a sister, who lived afar, barely kept contact with anyone, and never visited until now after she had been contacted (out of courtesy) by one of the family. We met, discussed her sister’s condition and her ongoing clinical decline as well as the consideration for moving to comfort care only. I suggested she speak with her family members as a final decision should be made soon. As I had mentioned earlier, the family was on the verge of unanimously agreeing to comfort care only but, with the sister’s arrival, unanimity was lost. She steadfastly refused to agree to anything but ongoing aggressive care “to give my sister every chance.” As explained to me by a family member family cohesiveness was important and, even though the sister was “late to the table,” family was family and decisions had to be unanimous. Ongoing discussions were to no avail, even one to forgo CPR in case of a cardiac arrest. Several days later the patient not unexpectedly suffered the feared cardiac arrest and could not be resuscitated. Afterward, as they were leaving the ICU, a family member pulled me aside to explain the reason the sister was so adamant to keep going was that she felt guilty about the lack of interaction with her sister through the years and she wanted to try to make up for it.

HATE I have debated this to myself through the years wondering whether someone could be so despised that family or proxy would want the patient to experience ongoing suffering. Something along the lines of, “that SOB was so mean and hateful through the years that it is now time for some payback.” Through the years I’ve heard colleagues occasionally comment on some “crazy and nonsensical” decisions made by family or proxy regarding patient care as pertaining to continuing aggressive care in what was perceived (at least by the doctor) as futile, leaving them to wonder if this was “payback” time. Were these decisions out of love, or hate? As I do not have any specific instances that I can recall during my years of practice I have no specific example for the latter.

THE CHECK Social Security is a wonderful thing for many elderly individuals providing some, if not all, of their financial support. The support from Social Security Disability also has a financial role in the lives of many non-elderly people. Unfortunately that financial dependence can have an untoward effect on decision making by family or proxy.

Consider the following two examples: 1) I participated in the care of an elderly woman admitted to the ICU after experiencing a devastating stroke. It became apparent over time that she was not going to recover and discussions were held with the family on a daily basis regarding her ever increasing poor prognosis and consideration of withdrawing the support of the mechanical ventilator. All eventually agreed but requested a “stay” of a few days so that, obstensibly, additional family members could arrive to say their “goodbyes.” While this was partially true, one of the family confided in me that they wanted to be sure her Social Security check arrived and was deposited before stopping care. While not an overly big issue, it did result in several more days of additional expenses to her medical bill to be paid, in her case, by Medicare. Multiply this by repeated scenarios across the nation and…well, I leave any conclusion to you.

2) On several occasions I helped care for a young man, late 20’s or early 30’s, who several years prior to our initial meeting had suffered a broken neck. This resulted in quadriplegia and reliance on a mechanical ventilator. He lived at home with his live-in girlfriend (routinely introduced in this day and age as “my fiancee”) and their two children. She was a bastion of support but had her hands full between his care and the care of the kids. Recurrent infections, whether urine or respiratory, over time became more frequent leading to repeated and longer hospitalizations. A confounding problem was that the infections became more difficult to treat as resistant bacteria were coming to the forefront. As time went by the armamentarium of antibiotics shrank and eventually became exhausted. The girlfriend understood that there was little else to be done therapeutically. During his last hospitalization the patient could no longer participate in his care and discussions regarding withdrawal of the ventilator were with the girlfriend. There was no “push” from the medical side to withdraw but each day the infection would get worse and all knew it was a “matter of time” before the patient died. During one of our conversations the girlfriend brought up the fact that they lived on the patient’s Social Security Disability income and she did not know how she could “make it” without that support. She continued to delay her decision until mother nature took its course. I never knew if she was able to keep the SSD benefits or not.

So there you have it: the four reasons that influence decision making on the part of family or proxy–love, guilt, hate(?), “the check”. But before you go, let me leave you with one more example and let you decide the reason for the decision. To make it easier, it was not “the check.”

An elderly man was admitted to my service in the ICU with neurological symptoms, generically labeled as “altered mental status” for which there are a variety of possible explanations. As the patient was non-communicative, through the EMR we discovered several medical problems requiring daily medication. Ongoing review of his primary care physician’s notes lead to the discovery that the patient’s wife had died about a year ago and he was “lost” without her. He no longer enjoyed life and, while denying any thought of harming himself, told his physician that he wanted to live out his days in peace and would want no heroic care in any event–“just let me go”. Unfortunately the patient did not fill out a living will or other advanced directives. A son, from what I recall an only child, arrived shortly after the patient had been admitted and was quickly updated. Over the course of the next day a number of diagnostic studies were done but the cause of the patient’s symptoms remained elusive. During this time the patient was becoming less responsive leading to an increased risk of aspiration. I discussed this with the son, pointing out that usually in this type of situation intubating the patient is a prudent step to protect the airway as much as possible. I also noted the conversation the patient had with his physician. While we still had a window of time before a final decision had to be made about intubation, the son wanted to think about it overnight. He returned the next day finding his father no better or no worse and that we were still at a loss to explain the patient’s current situation. At the son’s not unreasonable request, it was mutually decided to proceed with intubation and mechanical ventilation “for a few days” until the diagnostic evaluation would be completed. I did explain to the son that at the end of the road would be a decision of extubation versus tracheostomy if the patient’s condition did not improve. I did remind the son again of his father’s comments over the course of the last year. At that time the son indicated to me that he wasn’t thinking about a tracheostomy. Shortly after this I rotated off service, filling in my counterpart about the service and especially this particular case. Time passed and I would periodically check with my counterparts regarding this particular case. Details after I left the ICU service remain sketchy but this I know: 1) the cause of the patient’s condition was never specifically found but postulated to be related to severe cerebrovascular disease, 2) the patient never woke up, 3) a tracheostomy was eventually done at the insistence of the son even though numerous physicians advised against this while repeatedly reminding the son about his father’s wishes to “just let me go” and, 4) the patient was eventually transferred to a nursing home. So, dear reader, I leave it to you to decide the reason for the son’s actions.

(If you wish to leave a comment, click on the particular blog title on the sidebar. This will open up that topic again and at the bottom of the narrative there will be a comment section).