Surrogates may be ill-suited for the role due to lacking capacity themselves or failing to act in the patient’s best interest. Ethical approaches include:
• identify ways for unwilling surrogates to step down;
• as a last resort, seek appointment of a guardian;
• employ mediation skills to identify acceptable solutions.
Most people have not designated a surrogate decision-maker, but most states specify a priority sequence of default surrogates. Therefore, there is usually sufficient clarity on this issue. “Clinicians should not need ethics consults for this,” says Thaddeus Mason Pope, JD, PhD, director of the Health Law Institute and professor of law at Mitchell Hamline School of Law in St. Paul, MN.
Ethical issues arise when surrogates appear to lack capacity, or act contrary to the patient’s wishes or best interests. “Except in extreme cases, clinicians are too unwilling to challenge surrogates who are not faithfully representing the patient,” says Pope.
Some surrogates are unwilling to perform their duties. “In this case, the ethicist can help to identify ways for that surrogate to step down,” says Margie Atkinson, DMin, BCC, director of pastoral care, ethics, and palliative care at Morton Plant Mease Hospitals/BayCare Health System in Clearwater, FL. This allows the next available person who can abide by the patient’s wishes, by statute or alternate status, to move into the surrogate role.
The Illinois Health Care Surrogate Act provides a hierarchy of next-of-kin candidates for surrogacy. This is followed by healthcare providers in absence of a power of attorney or court-appointed guardian. “This law is reiterated in our policy, and easy to work through,” says Kathy Johnson Neely, MD, MA, medical director of the medical ethics program at Northwestern Memorial Hospital in Chicago.
The clarity of the law makes selection of surrogates very straightforward. There is rarely a reason to involve ethicists to identify a surrogate under the law. “But it may create new problems when an incapacitated, uncaring, or even nefarious surrogate is designated,” says Neely. The following are recent case examples where ethics stepped in:
• A frail woman suffering from dementia was hospitalized, and the husband insisted on making decisions. Yet it became clear he also struggles with cognitive issues. “This happens fairly frequently,” says Neely.
Ethical decision-making strives to ensure that the goals and plan of care are wise, and the discharge plan is safe. At the same time, ethics would urge the clinical team to not summarily dismiss a loving husband.
“Are there win-win negotiations that could encourage the husband to lean on trusted family or friends, and recuse himself as surrogate?” asks Neely. Only as a last resort would ethics recommend the appointment of a guardian. Even then, ethics would work with the guardian to include the husband as much as possible.
• An older patient with dementia received a surprising diagnosis of HIV/AIDS dementia. His wife was his surrogate, and was possibly put at risk for years without her knowledge. Clinicians questioned whether, in light of this news, she would be able to act compassionately in making decisions on his behalf.
Ethics would start by considering these clinical issues: What are the medical decisions at hand? Is it anticipated that the patient, once treated, might regain capacity? Are there other loved ones who can support his wife?
“We would also note the conflict in Illinois law,” notes Neely. The AIDS Confidentiality Act forbids a physician from disclosing HIV status to a spouse, unless the physician has asked the patient to do so, and after a reasonable amount of time — clearly impossible in this case. At the same time, the Illinois Health Care Surrogate Act allows surrogates access to all information that a patient is entitled to. “And common sense would have it that a surrogate has all the clinical information needed to make ethically permissible decisions,” says Neely. Given these complexities, ethics would assist the team in determining whether and how to disclose the patient’s HIV status.
• A woman suffered a postpartum hemorrhage, necessitating temporary mechanical ventilation support in the ICU. The woman had been with a long-term partner for years, and this was their third child. Her estranged parents arrived at the hospital, and used their status as surrogates to send the woman’s partner away from the bedside.
• Surrogates in the ICU setting often insist on aggressive care. As days turn into weeks, the patient becomes chronically critically ill. The surrogate becomes difficult to contact, and is a reluctant participant in the decision-making process.
The next step, says Neely, is for the ethics consultant to “employ mediation skills to understand the interests of the stakeholders and come up with acceptable solutions.”
• Margie Atkinson, DMin, BCC, Director of Pastoral Care, Ethics and Palliative Care, Morton Plant Mease Hospitals/BayCare Health System. Phone: (727) 461-8061. Email: email@example.com.
• Kathy Johnson Neely, MD, MA, Medical Director, Northwestern Memorial Hospital Medical Ethics Program, Chicago. Phone: (312) 694-2578. Email: firstname.lastname@example.org.
• Thaddeus Mason Pope, JD, PhD, Director, Health Law Institute/Professor of Law, Mitchell Hamline School of Law, St. Paul, MN. Email: email@example.com.