Case Study:
The son stopped me at the elevator. “I have to speak to you seriously. Do you have a minute?” He had been a previous medical colleague of mine “Sure,” as I walked with him to a quiet corner in the corridor of the complex continuing care hospital at which I worked.
“Maybe you know that my mother has been here for almost three months and my sister and I realize that we made the wrong decision before she was transferred. We agreed to a feeding tube hoping that she would recover from her stroke, as she had done previously. We knew this stroke was much worse, but you know we hoped.” He continued, “The hospital staff told us the tube would prevent complications such as aspiration, which she experienced even prior to this stroke. (1) She has been almost comatose since the transfer; she just lies there with the tube going into her stomach. We don’t think she even recognizes who we are although at time her eyes are open….but she just stares into space and hardly responds when we call her name.” He started to tear up, “This is not what we think she would have wanted. Can we meet to discuss what to do? (2)
At that time, besides an administrative role, I directed the ethics program at the facility which included a complex continuing care program. I said, “Of course, a meeting can be arranged-who do you want at the meeting?” “My sister, my wife and my brother-in-law and whoever you need from the staff.” He went on, “we have another brother who lives in the United States who could not come but we know he agrees with us and besides the two of us share the POA for her so we can make any necessary decisions.”
Why the decision had been made
The family/ethics committee/team meeting was called. The family members were consistent in their contention that at the time they made the decision they could not speak to their mother. They felt at the time that having made a reasonable recovery from two previous, albeit, smaller strokes, she should be given “a chance”. Also there was lots of pressure to “put the tube in because she was not eating. They could not just let her “starve to death.” Also, the staff really wanted to arrange transfer from acute care to elsewhere “more suitable for her needs.” The physician son said, “It was a pretty emotional time and the thought of just letting her go was too much for us. Then again there was that pressure and real hope: we had so much hope. She was such a vibrant person.” His sister nodded as he spoke and everyone agreed that the time had come to change their direction and allow her to die “peacefully”. They concurred that as they knew her she would never have wanted to be kept alive the way she was, not recognizing, not understanding, not laughing, and as the daughter said, “not eating.” (2)
Moral Distress among Health Care Staff
After the family agreed with their choice of discontinuing the tube feeding, the process was not as smooth as they and we on the ethics committee had anticipated. The health care staff caring for the patient were astounded by the decision even though they understood the law and the ethics. “She is no worse than when she came in, in fact she is somewhat better; the pressure ulcer that was incipient on admission is no longer there.” Two of the many very caring nurses expressed well the sense when they said, “It just does not feel right.” The attending physician made the following comment, which echoed some of the nurses who could not act on it as the doctor chose to; “I cannot write the order to discontinue the feeds as it conflicts with my personal and religious values.” (3, 4, 5, 6)
Clinical resolution with unanswered questions
Ultimately in order to carry through with the-agreed-to decision, the patient was transferred to the facility’s palliative care unit. There, the team understood the complex decision-making process of the family and were able, in good conscience and good clinical practice, to carry out the family’s wishes. No nutrients were given through the feeding tube which was capped. The patient, already in coma, was carefully positioned in a pressure reducing mattress to prevent the formation of pressure ulcers. There was no indication of pain or other discomfort that would have required suitable analgesics. With excellent nursing care she died in ten days. The body’s natural formation of ketone bodies as a consequence of not eating rapidly blunts the sense of hunger thereby preventing the erroneous description of starvation.
This composite case reflects the main issues surrounding the questions and challenges of artificial nutrition and hydration from the legal, ethical, clinical and symbolic perspectives. The main issues are:
-
Was the tube inserted based on a true understanding by her Substitute Decision-Makers (SDMs) of her previous expressed wishes or best interests? After the fact the SDMs claimed that they never had such a specific conversation. Therefore the initial process of decision-making was flawed. This deficiency commonly occurs as such conversations are not easy for families. (8)
- Did the family receive adequate explanation and counselling as to what the course of action would have been had the tube not been inserted? This would be necessary in order to counter the frightening concept of being somehow responsible for “mother starving to death.” Had the evidence and mechanism by which the body quickly protects itself from sensations of hunger much less starvation by the metabolic production of ketones been explained they might have rejected the offer of a feeding tube. (9)
- Was the family made aware that they had the ethical option and legal right to refuse initially, and after acceptance, change their mind about providing any treatments including artificial nutrition and hydration according to Ontario’s Health Care Consent Act? (8)
- Did the family know that the evidence suggests strongly that feeding tubes do not prevent aspiration? Thus their decision to allow one to be inserted would not change the possibility of such a complication related to her pre-existing swallowing problems or those that followed her stroke. (1)
- Was it really acceptable for a health care professional to refuse to participate in ethically and legally allowed medical decisions for which the Health Care Consent Act provides the authority to do so? This is a very complex issue in a multi-cultural and multi-religious society in which many people including health care providers have strong personal beliefs. (3,4,5,6) Usually the professional expectation is that physicians should provide all care necessary for their patients even when in conflict with their personal beliefs. The practice is often one where if another physician can be found to take over care, there is usually no recourse to admonish or take regulatory action against a refusing physician. It is much more complex for nursing and other health care professional staff where often it is impossible to fill in the gaps of service when a number of health care professionals’ views are in conflict with a proposed procedure. In those cases it could be viewed by regulatory bodies as unprofessional behaviour.
- Should it be necessary to transfer a patient from her home unit in order to avoid such a complex professional and emotional conflict? This personal internalization of the ethical conflict is often referred to as moral distress? (3)
Each of the above points has to be carefully considered when such decisions are recommended by health professionals and undertaken by SDMs on behalf of those for whom the act.
Conclusion
With an ever-increasing aging population in western countries, health care organizations and all the health care professionals involved in eldercare must become comfortable and knowledgeable with clinical, ethical and legal aspects of the decision to undertake artificial nutrition and hydration. (9) Aging individuals must take on the responsibility to express to their loved ones their preferences should an event arise that could lead to such a decision; they must make sure that they have the conversation and express their treatment preferences. They must also assure themselves that their SDMs will have the emotional capability to carry out their wishes even when it might conflict with their personal wishes and beliefs.
References
- Ackermann RJ, Withholding and Withdrawing Life-Sustaining Treatment. Am Fam Physician. 2000; 62:1555-1560. http://www.aafp.org/afp/2000/1001/p1555.html;
- Abbott KH, Sago JG, Breen CM, Abernethy AP, Tulsky JA. Families looking back: one year after discussion of withdrawal or withholding of life-sustaining support. Crit Care Med 2001;29:197-201.
- Kälvemark S, Höglund AT, Hansson MG, Westerholm P, Arnetz B. Living with conflicts-ethical dilemmas and moral distress in the health care system. Soc Sci Med. 2004;58:1075-84. http://www.ncbi.nlm.nih.gov/pubmed/14723903
- Pellegrino, ED. Nonabandonment: An old obligation revisited. Ann Intern Med 1995;122:377-8.
- Quill TE, Cassel CK. Nonabandonment: A central obligation for physicians. Ann Intern Med 1995;122:368-74.
- Culver KC, Cupples B.Why withholding treatment is not assisted suicide. Health Law Can 1999;20:12-6.
- Health Care Consent Act 1996: http://www.e-laws.gov.on.ca/html/statutes/english/elaws_statutes_96h02_e.htm
- Lallanilla M, Death from Dehydration Is Usually Serene, March 18, 2005, ABC News, The concept of moral distress in health care settings. http://abcnews.go.com/Health/Schiavo/story?id=531907&page=1
- Meisel A, Snyder L, Quill T. Seven legal barriers to end-of-life care: myths, realities, and grains of truth. JAMA 2000;284:2495-501.