Background:
Health care planning tools can be beneficial, but are difficult to navigate and do not always address the realities of real-time decision making. What are the challenges of advance care planning and how can we better educate our clients on their options to help make sure their wishes are honored?
On February 1st, 2023, we held an interactive panel on topics such as advance care planning tools and their practical applications, end-of-life decisions and palliative care, and health care decisions from an elder abuse perspective. See the recording and answers to off-camera questions below.
Panelists:
Dr. Diane Meier, Founder, Director Emerita, and Strategic Medical Advisor, Center to Advance Palliative Care
Heather Deare West, Esq., Director of Civil Legal Services of the Rural Law Center of New York
Alyssa Elman, LCSW, Supervising SW, Vulnerable Elder Protection Team (VEPT) at Weill Cornell Medicine
Following the event, panelists responded to a few unanswered questions. Please see below for their responses.
1. FHCDA (Family Health Care Decisions Act): If there is more than one adult child, do they have to come to a consensus decision as surrogates? Many people believe it is based on birth order! From the legal perspective, if there is no one in a higher level than children (i.e.guardian, spouse/domestic partner) and there are multiple children, only one child may act as the surrogate. It should be the child who knows wishes etc. It is helpful if all the children agree on one child to be the surrogate, a disagreement as to who shall serve as surrogate or what the patient's wishes are becomes an issue and delays actions. In practice, a hospital may ask that all the adult children agree to a “lead” surrogate, but may view all adult children as equal decision-makers.
2. Can you write in additional specific information and wishes on all forms mentioned? Yes you can write specific instructions/wishes on a Health Care Proxy or discuss those with the medical personnel
3. Is there a different between making health care decisions in a hospital setting and nursing home setting? The law applies equally regardless of setting. In practice, however, the contexts are completely different. The main difference is in levels of staffing and staff training in communication about goals of care and medical decision making. Nursing homes can be grossly understaffed and unable to provide access to well-trained doctors/advance practice providers who are trained in the complexity/nuance of medical decision making on behalf of a person who does not have decisional capacity. In the nursing home setting therefore, it is especially important to have an informed and confident surrogate decision maker who can advocate on behalf of the resident's best interest, and prior values/preferences.
4. Capacity can wax and wane over time, how is it determined when the heath care proxy ought to step in on an individual’s behalf? Under NY Public Health Law Section 2983, the attending practitioner makes the determination if the patient lacks capacity "to a reasonable degree of medical certainty." For a decision regarding withdrawal or withholding of life-sustaining treatment, the attending practitioner who made the determination must consult with another physician, physician assistant, or nurse practitioner to confirm the determination. For patients who lack capacity because of a mental illness or developmental disability, there are additional conditions. The attending physician can also determine if the patient has regained capacity, therefore ending the health care proxy's authority. It is also possible the patient has capacity to make certain decisions, but not others. It’s an ongoing conversation. Capacity is determined by an assessment of the person's ability to appreciate the nature of the decision; alternatives; risks and benefits of all alternatives; and able to explain their choice based on a clear set of justification or grounding in a set of values. For example, "I promised my wife I'd never put her in a nursing home. Since this procedure carries a high likelihood of her requiring nursing home care for the rest of her life, I have decided to decline the surgery."
5. Should healthcare providers take special consideration to anything when a patient is filling out healthcare decision-making documents while in the hospital? Making sure the patient has capacity to understand what is going on, is the patient on any medication that might interfere with his/her thought process and to be aware that anyone else in the room (or outside) might be trying to influence the patient. Also make sure they do not seem distraught or distressed. Remember that decision making capacity is decision-specific- a person who can decide what they want to eat for dinner may not have capacity to decide about the benefits/burdens of a high-risk medical procedure.
This Webinar is presented by the Good Guardianship and Autonomy Preservation (G-GAP) Coalition. Click here to learn more or sign up for future communications.