George had been a lawyer and had sat on the bench as a judge in the midwestern United States for a number of years. With two distant daughters, his wife was his main support and caregiver. George's progress in dementia was steady but not fast - typical for his age of 72. His Mini-Mental Status Examination score actually had gone up a few points over the last several assessments, rising to 19/30 from a low of 16/30. His functioning was compromised by his vision loss, the result of previous strokes. He is a man who has lived by his intellect and especially his verbal skills and extensive command of the English language. He has been depressed consistently by his dementia diagnosis and inability to function as he would like. However, he functioned relatively well and enjoyed the interactions he had with the study staff during the evaluations completed as part of an ongoing study I was conducting on quality of life predictors in individuals with irreversible dementia.
When I received word of a massive stroke, the message also included a notice that his wife had decided that no artificial means of feeding would be used in the event George could not swallow. It was several days following the stroke that I was first able to see him. Expecting to find George severely impaired and only semiconscious, I was both surprised and elated to find him able to move all four extremities with no apparent loss of function (some dropping of his left foot), able to be assisted to the bathroom, with no loss of verbal ability (which had been so important to George previously), and with no apparent added loss of mental capabilities. His first words on waking and seeing me sitting there was that he was "dreaming of fast food." He had not eaten or had any nutrition since Monday, 6 days prior to my visit. In talking with his nurse, I learned the stroke was minor and the swallowing difficulty actually was the only unrecovered aspect of his functioning. Several swallowing evaluations had been completed, with the last evaluation indicating a delayed swallow reflex. He was to be reevaluated early in the week, but no nutrition or tube feedings could be given because of the decision by his wife regarding no artificial support. I could sense the uneasiness and frustration of the nurse when telling me this. She was clear her intent was to keep him functioning (e.g., walking to the toilet). I talked with George for several minutes (he was sleeping off and on) and asked, as I always do, if he had any questions for me before I left. He laughed and asked, "Where's the nearest fast food restaurant?". I did not have the sense that this was a man ready to concede life, and it was clear his stroke was by no means major or life threatening. The imposed lack of nutritional support was. the greatest threat to his life.
When I reached his wife by telephone the next day, it was evident that George had already been "written off." A clear decision had been made, despite his progressive recovery and intact functioning from the stroke. His wife and I talked at length, and I learned this decision had been reinforced clearly by the health care personnel with whom George's wife had been in contact. The neurologist held very little hope for George ever regaining his swallowing ability, despite the fact it had been less than 1 week after the stroke and already there was progress in the swallowing evaluations. The neurologist from the memory center where George's progress was being followed also offered no encouragement and had told his wife not to expect any progress. No one had offered any type of rehabilitation, although he still was receiving some therapy for the swallowing. No recommendations fit the accepted protocols for post-stroke recovery. At the recommendations of all health care personnel involved in George's care, he was to be transferred to a hospice facility that afternoon. I know of no stroke care protocols that call for sending a patient to hospice for palliative care and nutritional deprivation after only 7 days following the stroke, especially when the individual has shown potential for full recovery. George's wife could not be swayed in her decision, despite my careful review of the progress George had made, the usual recovery time for functioning in poststroke patients, the usual treatment and therapy options George was not receiving, and the "catch-22" of being expected to show significant (in this situation, full) recovery without the benefit of nutritional support to facilitate function, much less healing. George's wife also was not open to the conceptualization that not all nutritional support via feeding tubes truly is advanced life support or artificial life support; often these types of short-term therapies are necessary for healing. I ended the conversation feeling defeated, more for George than myself, because I knew I was his only voice at this time and knew I had not been heard.
The next day, after visiting some patients in another city, I returned home ready to make some telephone calls, including one to an ethicist I had heard was very knowledgeable and a consultant for the study in which George was participating, hoping to get some objective input and advice. I also had decided to telephone another physician in the memory disorders clinic with whom I had worked more closely and ask him to look at this case. I could not justify this decision or feel in any way that George was ready to die - physically, mentally, or emotionally. When preparing to start my telephone calls, I checked the messages for the day and found that George's wife had called. It seems that right after our conversation the previous day, she received a call from the hospital saying George had started swallowing, was eating normally, and could be discharged the next day - no inpatient rehabilitation activities, but at least a chance at life.
This case study is not a new scenario but one I have encountered a number of times before. The circumstances may change slightly, but the context is very similar: a physical setback (that usually is reversible with the appropriate support or therapy, often backed by well-established protocols that are not followed or often even presented to family members); recommendations by health care providers of no treatment or support if it involves any artificial means, even short-term placement of a feeding tube; and decisions made by family members to forego well-established and accepted treatments, using the advice of health care professionals, without any consideration of other possible outcomes. The result in most cases I have encountered has been slow, tortuous death, in some cases involving anger secondary to helplessness on the part of the individual with dementia.
What is happening here? Do health care providers first and foremost see the dementia diagnosis and then the secondary event or diagnosis? Are caregivers just tired and ready and willing to accept any recommendations for termination or noninitiation of therapy, without asking about options and understanding the full range of possible outcomes? Are families truly unable to distinguish between extraordinary life-extending artificial life support and routine therapy and treatment for reversible conditions, even if it may mean the short-term placement of a feeding tube? Why are the ethics committees and patients' rights safeguards inherent in most care settings not involved in cases where the individual has a dementia diagnosis? If I encounter these situations often in a very limited research context (approximately 100 families), how often must this type of scenario occur without anyone noting the inconsistencies and inherent ethical issues surrounding these decisions? Importantly, who speaks for individuals with dementia if no one is noticing and caring about the outcome most important to them - life?
Finally, it is important to note that my concern is not just extending life but is a concern for quality of life, with the possibility of a degree of quality of life being hampered by these multiple issues:
* Treatment bias in the context of normally treatable medical conditions.
* Willingness of family members to forego ordinary treatments on the basis that they are extraordinarily and artificially extending life.
* The fact that no one seems to be paying attention to the individual with dementia, their attitude, capability for recovery, and desire to live.
* A lack of systematic or objective evaluation of the ethics of these types of situations. We no longer can ignore the rights of individuals with dementia and their potential for quality of life, the need to recognize their potential and actual suffering when these types of decisions are made; and the fact that a dementia diagnosis should not override the importance of attending to treatable and reversible medical conditions with appropriate and "customary" care.
Names have been changed for purposes of anonymity.