(The pdf for the issue in which this article appears is available for download: Bifocal, Vol. 38, Issue 4.)
At last count 45 states have statutes offering guidance on who can make health care decisions for a Person who is unable to make or communicate health care choices, and has nothing in writing naming a health care surrogate. [1] Little research has been done on how effective the laws are in shaping health care decision making in clinical settings. Among the lingering questions are; do the laws reflect good clinical practice? Do specific provisions in the laws provide meaningful guidance?
With funding from the Retirement Research Foundation, the ABA Commission on Law and Aging in collaboration with the Society of Hospital Medicine [2] and Society of Critical Care Medicine [3] have been looking at these issues. Here is a very preliminary overview of what we are finding.
The research looked at who health care providers discuss treatment options with, when the patient lacks the ability to make or communicate health care decisions. The answer is overwhelmingly that clinical practice is to talk with everyone who is present and demonstrating knowledge of the patient and a genuine interest or concern for the patient. While the laws tend to focus on who can consent for medical care, clinical practice is to consult with anyone who might lead to an understanding of what health care choice the patient would make, if the patient were able to make and communicate a choice.
The majority of state laws have a suggested list of persons to make health care decisions for a person who lacks capacity, and has nothing in writing naming a health care surrogate. In 38 states the law has a list and directs that the highest ranking person(s) on the list becomes the default health care surrogate (commonly referred to as hierarchy statutes.) [4] Generally the statutes name as the default health care surrogate the nearest living relative or next of kin. Our research reveals that these provisions largely match clinical practice of asking the next of kin for consent. We asked a couple of questions on this issue, one involving a difference of opinion between the spouse of the patient and an adult child of the patient, and second question with the difference of opinion between the patient’s adult child and a close friend of the patient, and the answers consistently pointed to seeking consent from the legal next of kin.
A more challenging scenario is a conflict between “surrogates of the same class.” A good example of this is when the adult children of the patient are the nearest living relatives of the patient and there is conflict regarding health care choices between them. Law makers have tried to provide guidance for resolving these conflicts, short of litigation. [5] At last count 19 states have provisions allowing for majority rule when conflict arises between surrogates of the same class. Our research shows that these provisions are largely unhelpful in clinical practice. Clinical practice has a two pronged approach, to provide appropriate medical care and preserve family harmony. As several respondents described it, clinical providers want to, “assure that the family survives the illness or death of the patient.” While true consensus can be difficult to reach, at a minimum health care providers want to assure that everyone understands the nature of the illness or injury, the treatment options that are available, the risks and benefits of possible treatments, the likely outcomes, the choice that is being made and why. Clinical practice is much more complex than selecting a person and asking that person to make a decision.
| “The answer is overwhelmingly that clinical practice is to talk with everyone who is present and demonstrating knowledge of the patient and a genuine interest or concern for the patient.” |
Likely the greatest challenge for both the law and for health care providers, is patients who lack capacity and do not have readily identifiable family or friends to make health care decisions. Sometimes known as unrepresented, solo, unbefriended or isolated patients; fourteen states have nine different statutory models offering guidance on health care decision making for these patients. [6] The research reveals that the statutory provisions are largely unhelpful and that these patients present the greatest challenge in clinical medicine. Two promising concepts from the research; 1: providers tell us that careful research frequently identifies family or friends for patients who have initially been classified as having no surrogate, 2: the respondents urge efforts to identify patients at risk of being classified as unrepresented – with special efforts made to encourage advance care planning.
We continue to work with the research findings. Additional details and recommendations for training and policy will be available in a few months.
[1] http://www.americanbar.org/content/dam/aba/administrative/law_aging/2014_default_surrogate_consent_statutes.authcheckdam.pdf
[3] www.sccm.org
[4] Id 2
[5] Id 2
[6] Id 2