EXECUTIVE SUMMARY

Surrogate decision-makers face these unique ethical considerations if the patient has dementia:

  • Many dementia patients don’t have advance directives.
  • Advance directives don’t always address dementia.
  • Surrogates may lack sufficient information about the patient’s wishes.
  • It may be unclear whether a patient’s wishes prior to their decline should take precedence over the patient’s current wishes.

Even when the prior wishes of a patient with dementia were known, the process of decision-making was often fraught with complexity, found a recent study.1 Researchers interviewed 34 family members who had taken on the role of surrogate decision-maker. Most reported there was not an advance care plan in place for the person living with dementia.

“The challenges for surrogate decision-making in patients with dementia are like all such challenges, but on steroids,” says G. Kevin Donovan, MD, MA, director of the Pellegrino Center for Clinical Bioethics at Georgetown University Medical Center in Washington, DC.

Directives Difficult to Interpret

Many dementia patients don’t have advance directives. When they do, they may have a living will, which becomes difficult to interpret. “Or, they may have an appointed surrogate with whom they had insufficient conversation about the values they hold most significant,” says Donovan.

Advance directives are often silent on the issue of how an individual wishes to be treated if they develop dementia. Ben A. Rich, JD, PhD, emeritus professor and School of Medicine Alumni Association Endowed Chair of Bioethics at the University of California-Davis Health System, explains, “We are still in the early stages of incorporating dementia into advance care planning and advance directives.”

Even patients with advanced dementia don’t always require medical interventions such as mechanical ventilation, artificial nutrition and hydration, or renal dialysis, which can be prospectively refused by means of a directive. “An individual might execute a very detailed directive indicating they do not wish their life prolonged in a profoundly demented state,” says Rich. Such a directive would be ineffective, however, in preventing the provision of nutrition and hydration by mouth. Rich recommends that ethicists educate both healthcare professionals and patients about the importance of including dementia in advance directives.

Even so, it’s problematic trying to honor the wishes of a dementia patient who indicated their wish to withhold or withdraw life-sustaining medical treatments in the future as they decline. Donovan explains, “It’s often unclear how much of a decline should trigger their advance directive.”

If the advance directive includes assisted suicide or voluntary stopping of eating and drinking, the question becomes whether the patient’s anticipated low quality of life should take precedence over the patient’s current wishes. “Should surrogates hesitate to act when the patient with dementia seems happy, comfortable, and content with their present state?” asks Donovan.

Patients may have made a judgment about their quality of life in advance. However, Donovan says surrogates should not unilaterally impose their own values on patients who, although diminished, seem comfortable and content in the present. “Otherwise we may see more incidents like in the Netherlands recently, where a doctor and family held a woman down to euthanize her over her objections and despite her resistance, because she had indicated that she might prefer that someday if things got bad enough,” says Donovan.

No Easy Answers

Evelyne Shuster, PhD, member and former chair of the Ethics Consultation Services at the Philadelphia VA Medical Center, says cases where the patient never had decision-making capacity are most difficult. “Healthcare providers cannot share treatment options with the patient, and they have no idea what the patient would want done,” she explains.

Physicians’ only option, therefore, is to discuss with the next of kin or surrogate the risks and benefits of possible treatment, including no treatment, and to act in the patient’s best interest — including making sure that the patient will not be worse off. Ideally, healthcare providers would listen to the surrogate’s concerns about the patient’s welfare, and explain possible treatments so that an informed choice can be made that is consistent with good medical practice and good medical ethics. “There may be a number of obstacles to overcome in the process of achieving this end,” Shuster says. Hospital policies on withholding and/or withdrawing of hydration and nutrition are one example. “To avoid conflict, the surrogate should inquire about these and other similar policies before hospitalization of the mentally incapacitated patient,” says Shuster.

Less problematic are cases where the patient had decision-making capacity, but is now demented and unable to speak for himself or herself about what he or she would want done. “This patient, now incapacitated, may have a valid advance medical directive document where he or she named a surrogate,” says Shuster.

The surrogate’s goals are to speak on the patient’s behalf and ensure that his or her wishes are respected, and thus, make an informed choice in agreement with the patient’s expressed wishes. “If the wishes of the patient cannot be determined, others will make medical decisions for that patient,” says Shuster. “I doubt this is what a person would want for oneself.”

Shuster adds, “The most important thing I have learned in my profession is that there is in each person an incredible will to maintain one’s own integrity, control, dignity, and a sense of self.”

This is undermined when others make decisions on the patient’s behalf without the patient’s consent, based on wishes that are not the patient’s. “This is what happens when no one knows what the patient’s wishes are and there are no advance directives to consult,” says Shuster.

Shuster once consulted on a case involving a nursing home patient with mental incapacities, but who had decision-making capacity. The patient wanted solid food, and adamantly refused to eat whenever the food came pureed.

“In talking to him, I began to understand how important food was to him, but the real issue was not the food,” says Shuster. The real issue was the patient’s desire to maintain a sense of control over his life. “Eating lunch the way he envisioned was his way to tell himself and the world, ‘I am here, alive and in control of my life; I am not a child. You must respect my wishes of wanting to eat my lunch the way I can enjoy it,’” says Shuster. The patient understood the risks involved, such as aspiration or pneumonia, and was willing to take those risks.

“But sadly, as I understand it, his request for solid food was denied,” says Shuster. “These are difficult cases which have no easy answers.”

REFERENCE

  1. Fetherstonhaugh D, McAuliffe L, Bauer M, et al. Decision-making on behalf of people living with dementia: how do surrogate decision-makers decide? J Med Ethics 2017; 43:35-40.

SOURCES

  • G. Kevin Donovan, MD, MA, Director, Pellegrino Center for Clinical Bioethics, Georgetown University Medical Center, Washington, DC. Phone: (202) 687-1122. Email: donovangk@georgetown.edu.
  • Ben A. Rich, JD, PhD, Emeritus Professor and School of Medicine, Alumni Association Endowed Chair of Bioethics, University of California-Davis Health System. Phone: (916) 734-6010. Fax: (916) 734-1531. Email: barich@ucdavis.edu.
  • Evelyne Shuster, PhD, Veterans Affairs Medical Center, Philadelphia. Phone: (215) 823-4206. Email: evelyn1@seas.upenn.edu.