End of Life Care Decision-Making for Persons Without Designated Decision-Makers: Adult Orphans

INTRODUCTION

The population known as "adult orphans" includes adults who lack a family or a designated decision-maker. "Unbefriended adults" represents a sub-category of adult orphans. These are people who are often homeless or who live in marginal settings due to long histories of chemical abuse, mental illness, or mental incapacity. When people within these populations lose decision-making ability, they often have no one who can make end of life treatment decisions for them. Patients in this population can be denied comfort-oriented care because the care or treatment requires informed consent.

Little data exists on the number of people who fall into the adult orphan category. In a 1989 study of nursing home residents, 45% of the next of kin listed in the charts could not be reached for participation in major decisions regarding resuscitation status (Fader et al., 1989). In Minnesota, social services staff from Volunteers of America estimate that they handle approximately 250 calls per year regarding end of life decisions about people who have impaired decision-making capacity and who have no legally designated decision-maker. The Alzheimer’s Association of Minnesota agrees that the problem is very real and that the numbers of adult orphans reaching the end of life are growing.

A variety of diseases are likely to decrease a person’s capacity for making decisions at some point, especially at the end of life. Patients with such illnesses as dementia, Alzheimer’s disease, brain injuries, intellectual disabilities, mental illness, chemical dependency, the frail elderly, stroke victims, and patients in persistent vegetative states are particularly at risk. In one study of long-term care residents, 47% lacked all decision-making capacity and another 26% retained only partial capacity (Miller & Cugliari, 1990).

Two ethical standards of decision-making by proxy provide a framework for considering how to best intervene with the adult orphan population.

In the absence of a written directive, a surrogate can come to the same decision the patient would if he or she had the decision-making capacity. Substituted judgement involves knowing the patient and understanding care wishes and goals at the end of life.

With this principle, the surrogate need not have knowledge of treatment preferences. Instead, he or she applies a general understanding of societal values in order to make treatment decisions.

Ideally, the surrogate decision-maker would use substituted judgement as the basis for treatment choices. The best interest principle can be problematic because the surrogate’s own background and values may effect his or her decision.

CONSERVATORSHIP IN MINNESOTA

Medical decisions for patients at the end of life often have to be made quickly. Minnesota’s current process for conservatorship is in many cases too cumbersome and time-consuming for end of life care decisions.

The current process for conservatorship takes approximately six to eight weeks. Funding is available to pay for a conservator’s time once he or she is appointed, but the legal fees, the conservatee’s legal fees, and court costs, which amount to approximately $1,950 are the patient’s responsibility. If the petition is contested the fees are much higher. An emergency conservatorship process, with a one to three-day turnaround is available in cases of life-or-death, but this process is primarily reserved for life-saving interventions.

Treatment decisions that require consent. Palliative treatment decisions are usually made with the input of the patient or family. In some cases, these treatment decisions require informed consent. For example, a procedure to implant a pain control device in the body requires consent by the patient. In the case of the adult orphan who lacks a legal decision-maker, it may be difficult to change the nature of care as patient needs change.

Hospice care. Enrollment into a hospice program also requires informed consent on the part of the patient or the legal decision-maker. Adult orphans might not be able to receive hospice services because of the lack of a decision-maker and the time it takes to designate one through the legal system.

Lack of research. Little research exists concerning the population of adult orphans at the end of life. Understandably, this population is difficult to identify and locate. Very little information describes where these patients live, where they are cared for, and what the most favorable course of action should be regarding their health care decisions.

For adult orphans who lack decision making capacity, public and private policy makers should promote and implement improvements in end of life care to:

• Develop procedures within health care systems (hospitals, clinics, long term care etc.) to identify those people who do not have responsible family members or other resources to make surrogate health care decisions.

• Develop a system to assist adult orphans in identifying a health care agent (surrogate) or executing a health care directive.

• Explore options for an expedited decision making process that recognizes the need to make emergency comfort care or palliative care treatment decisions.

The population of people defined as adult orphans are particularly at risk at the end of life because they often lack decision-making capacity and a surrogate to make decisions for them. Recommendations include earlier identification of those at risk and earlier intervention with them to identify end of life health care wishes and goals. In addition, the Commission recognizes the need for a process to assure that adult orphans will receive appropriate and timely emergency comfort care and palliative care treatments.