Bioethics is often done along the remote frontiers of new medical technologies or in the context of complicated medical decisions that are riddled with doubt and uncertainty. However, sometimes the simplest, mundane cases create the most powerful ethical dilemmas as well as insights. Consider the real life case of an 88-year-old man I will refer to as Harold Brennan. Harold made a simple demand upon those caring for him: that no one turn him over in his hospital bed. This seemingly simple request created a difficult ethical conundrum. Although such requests are rare, they are of much relevance in trying to understand the challenge of respecting patient autonomy with regard to all requests made by patients about every aspect of their care.
Harold had won many military honours during combat in the Pacific during World War 2. The marine veteran had been in fairly good health until his 88th birthday, living independently in the house he and his now deceased wife had bought when he returned from the war. His only daughter lived nearby and a visiting nurse looked in on him once a week. But this independent lifestyle changed when a series of mini-strokes left the grandfather of three partially paralysed and unable to feed, dress, or groom himself. Staying in his home was no longer an option. Harold was now bed-bound in an acute care hospital—a circumstance that he hated. Plans were being made for admission to a long-term care facility, the idea of which he hated even more.
Being bed-bound was quickly creating another problem—bedsores. The nursing staff at the small community hospital worked hard to prevent skin breakdown. They got him a special air mattress and turned him regularly. Still, despite their efforts, within 4 weeks he developed small painful ulcers over his legs, back, and buttocks. Harold did not just hate being bed-bound; his ulcers caused him great pain whenever he moved or was moved. He decided he did not want to be turned at all. It simply hurt too much. And he intensely disliked being so dependent on others. He told his nurses “no more turning”.
The nursing staff were horrified at this demand. They knew that Harold would die from infection without good pressure-sore management. And they knew that hospital administration all the way up the chain of command would be unforgiving of a patient dying of an infection caused by skin ulcers. This is precisely the sort of death that brings censure from both local quality control authorities and from regional quality assurance monitors. In some nations, such as the USA, death from a pressure sore might be viewed as entirely preventable and as such could result in no compensation being paid to the hospital for the patient’s care.
The nurses begged Harold to allow himself to be turned. But he was adamant. They warned him that in refusing to be turned he was killing himself. That news seemed to only strengthen his resolve. The nurses pressed his doctors for a “psych” consult. That was done with the outcome that Harold was deemed well aware of his surroundings, angry but not depressed, and fully competent to make decisions about his care.
Some nurses began to grumble that if they could not practise the appropriate “standard of care” for ulcer management and skin integrity they did not want to be involved in his care. Others, willing to respect his wishes, began to carefully chart Harold’s continued refusals to be turned in anticipation of the inevitable investigation that would follow upon his death. His attending physician was uncertain and troubled about how to handle Harold, but went along with his refusal to be moved. He wrote prescriptions for his pain, which Harold accepted and took. The chief administrator of the hospital received many complaints about Harold’s anti-turning stance. She wondered if there was a standard form Harold ought to be asked to sign; a consent form stating he knew the risks and consequences of his refusal to be turned but did not want that done. A quick literature search turned up policies on not resuscitating, not treating at all, and on stopping dialysis, but nothing on a patient’s request not to be turned.
After a couple of weeks of not turning, a heated controversy erupted among the caregiving team. Could Harold or any other patient deny care considered basic and standard? If he asked not to be turned could he also demand that the heat be turned off in his room? Could he refuse to let anyone touch him at all? Could a patient demand no elevation of his bed? No taking of vital signs? And without a clear policy about a request not to turn, were the hospital staff exposing themselves to a good deal of bureaucratic and regulatory grief when Harold died?
Staff meetings were held to which Harold’s daughter was invited. She did not come. She could not bear to be with her father as his body began to fall apart. No consensus emerged from the meetings other than to try and transfer the patient. No nursing home would take Harold because of his skin ulcers and related infections. Harold remained adamant. He remained unturned.
Harold’s condition deteriorated. Infection gripped his increasingly frail body. His skin lesions grew larger. His roommate was moved. Staff were forced to wear masks when they entered his room because of the horrific smell. He seemed lethargic and was slipping into incompetency. Finally, after 5 weeks of misery and overt hostility from some of the nurses and a few of the physicians, Harold died. The anticipated investigation of his death ensued. There was a huge amount of finger pointing about Harold’s skin management from the time he was admitted to the time he died. No one ultimately was punished but morale and camaraderie at the hospital suffered greatly.
Harold seems to have been well within his legal rights to refuse turning. But would a hospital or a nursing home be within their rights to refuse him admission if what he wants is well outside the standard of care? Should all health-care institutions have a policy on turning? Although such requests are rare, the turmoil they cause is enormous. Should “not turning” be offered as an option in circumstances akin to those governing the ending of dialysis, ventilator support, resuscitation, and chemotherapy? Should turning be a topic of discussion as part of writing an advanced directive? If so, what support ought to be given to health-care providers involved in a case where a competent patient insists on not being turned?
The moral value of respecting autonomy is clearly what would drive the ethics of honouring a do not turn request from a patient. Each individual who is competent has the fundamental right to control who can touch their body. But this request comes at a very high price, not just for the patient but also for other patients who are exposed to the resulting bodily deterioration as well as for the doctors and nurses who must stand by helplessly as the process of decomposition takes its course. Regulatory agencies and administrators have little tolerance for lethal infections that are the result of skin breakdown, irrespective of what a patient might have said about his unwillingness to be turned. Nor should they. While autonomy is a hugely important value, the ability to provide care in minimally humane and safe conditions must also be respected. This leads to the heart of the moral issues involved in setting limits to individual autonomy in health care.
What if a patient’s request has consequences for others—don’t they count ethically? If a patient who refuses to be turned imperils the safety or wellbeing of other patients then his autonomy ought be limited accordingly. Transfer to home or another willing institution seems ethical. If that cannot be done, however, then “do not turn” becomes a hindrance on the ability of staff to do anything for the patient and, just as importantly, may adversely impact what they can do for other patients. Should that prospect loom, autonomy ought to yield to institutional safety, efficacy, and provider duties to others.
There ought always to be comprehensive discussion with patients facing skin breakdown about how their care will be managed. The nature of the limits of what can and cannot be requested must be made clear early on in the course of care. Policies that outline such limits ought to be considered, debated, and adopted by all health-care facilities dealing with chronically ill, bed-bound patients.
Some may argue that limiting “do not turn” requests is to limit the very same autonomy that permits patients to refuse all medical care or to refuse particular treatments, such as dialysis or the implantation of a left ventricular assist device. However, refusals of these interventions do not have the same impact upon others, particularly the ability of a care team to function. The burden on nursing staff in particular of a death that results from a refusal to be turned might well exceed the effect of most other declinations of treatment. The ability of the institution to function can sometimes trump the wishes of the patient if the refusal of care creates unsafe, unhygienic, or even unbearable conditions.
Should physicians and nurses document requests not to turn? Yes. Should so-called “Hold Harmless” forms—documents in the USA that request the patient indemnify the institution against regulatory or state liability for their death—be introduced for requests that require violations of basic practice standards? Perhaps. Are regulators, bureaucrats, and judges likely to mitigate liability with the initiation of such documentation? That is unknown.
Must do not turn requests by competent patients be honoured? Patient autonomy is a strong value in the ethical values that guide health care. It is not, however, the only value. It should not be honoured when such requests pose unacceptable risks and dangers to other patients or the ability of staff to function. Where and how these values are to be balanced against patient autonomy is not clear. That they ought to be balanced is. The “simple” case of a request not to turn reveals a key moral truth—that autonomy has its limits.