The best way to explain the difference that this act is likely to make to dying patients and their families is to give a real scenario of a case I dealt with at a hospital where I worked several years ago, and how it would be different once the act takes effect.
A patient who had suffered a series of strokes was brought into the emergency room. He had been alone and it was unknown how long it had been since the onset of the strokes. Family members were called, and when they came to the ER, the doctor informed them that their loved one would not be able to communicate or care for himself and would, at best, be confined to a wheelchair, having also lost the ability to walk.
The relatives were asked if their loved one had an advance directive. He did not, they responded, because the family never wanted to talk about death or dying. Because there was not “clear and convincing evidence” that he did not want to be kept alive by artificial means, the staff began to stabilize his condition.
He was then transferred to the intensive care unit and eventually he had to be placed on a respirator because his condition was deteriorating and he could no longer breathe on his own. He was also given artificial nutrition and hydration. The patient was able to open his eyes but he did not seem to know his family. Once he was stabilized, which took several weeks, he was transferred to a nursing home, where he lived for some time before succumbing to an infection.
One day I saw one of the man’s daughters in the hallway on her way to visit her father in the ICU. She started crying and telling me how terrible things were for her dad. She said that he never would have wanted to be kept alive this way. I asked her how she knew that and she said she “just knew.”
I explained to her that “just knowing” was not good enough in New York State because the law required an explicit advance directive that stated that he would have declined the respirator and other life-saving treatments under these circumstances. Further, he would have to had explicitly stated that he did not artificial nutrition and/or hydration.
She then asked how he could have avoided this situation. We began a conversation about advance directives. Before going home that night, she got copies of blank health care proxies and left swearing that everyone in her family was going to complete one because none of them wanted what had happened to her father to happen to them.
Here is what is likely to happen under the new law, using the same case (as best we know at this point, since the final version has not yet been released).
After determining that the patient will never be able to communicate or care for himself, his doctor will talk with the family about the patient’s wishes. Rather than ending the conversation when the family says that there was neither an advance directive nor any discussion about dying or death, the doctor will ask what the family believes the patient would have wanted.
A surrogate will then be selected and empowered “to make health care decisions for [the] patient who lack[s] capacity to make their own health care decisions and who have not otherwise appointed an agent to make health care decisions…or provided clear and convincing evidence of their treatment wishes.” The surrogate will be selected based on the following list:
- guardian authorized to decide about health care
- the spouse, if not legally separated from the patient, or the domestic partner
- a son or daughter 18 years of age or older
- a parent
- a brother or sister 18 years of age or older
- a close friend
The surrogate will make decisions, “in accordance with the patient’s wishes, including the patient’s religious and moral beliefs or, if the patient’s wishes are not reasonably known and cannot with reasonable diligence be ascertained, in accordance with the patient’s best interest. An assessment of the patient’s best interests shall include: consideration of the dignity and uniqueness of every person; the possibility and extent of preserving the patient’s life; the preservation, improvement or restoration of the patient’s health or functioning; the relief of the patient’s suffering; and any medical condition and such other concern and values as a reasonable person in the patient’s circumstances would wish to consider. In all cases, the surrogate’s assessment of the patient’s wishes and best interests shall be patient-centered; shall be made on an individualized basis for each patient, and shall be consistent with the values of the patient, including the patient’s religious and moral beliefs, to the extent reasonably possible.”
“The surrogate will have the authority to make any and all health care decisions on the adult patient’s behalf that the patient could make (if the patient could speak for him or herself) and shall have the right the receive medical information and medical records necessary to make informed decision about the patient’s health care. Health care providers shall provide and the surrogate shall seek information necessary to make an informed decision, including information about the patient’s diagnosis, prognosis, the nature and consequences of proposed health care, and the benefits and risks of the alternative to proposed health care.”
There is still an outstanding question about artificial nutrition and hydration. The law seems to indicate that a person must still specify on a proxy form whether he or she wants to receive artificial nutrition and/or hydration. However, since the final version of the law is not yet available, it is still an unknown.
Clearly, the Family Health Care Decisions Act will be beneficial for both patients and family members. Institutions have until June 1 to amend their policies to respond to the act.
Rev. Dr. Martha R. Jacobs is founding managing editor of PlainViews, an e-newsletter for spiritual care providers, sponsored by HealthCare Chaplaincy. She is the author of A Clergy Guide to End-of-Life Issues.