A recent study published in the Annals of Internal Medicine studied how often patients with advanced cancer discussed end of life care with their health care providers. The study found that most patients (73%) had end of life discussions, but most discussions happened less than 1 month before death and during hospitalization. I was shocked by this study, primarily by the fact that these discussions were basically happening in the hospital shortly before death. This is not the ideal time and place to make decisions regarding this type of care, as the patient is often in pain and the family members are often emotionally upset. It is much better to make these decisions in advance, when you are fully competent and not distracted by the course of an illness. There are many ways to make your wishes known in advance.
A Health Care Proxy is a document that allows you to appoint an agent to make medical decisions for you in the event you are not able to. A Living Will is a document that states what your wishes are regarding end of life care, such as whether you wish to have CPR, artificial nutrition and hydration, pain medicine and antibiotics. If you would want artificial nutrition and hydration stopped when you are in a terminal condition, then such wishes must be placed in writing, or there must be clear evidence that these are your wishes. Without a Living Will or satisfactory evidence of your intent, a doctor will not be able to withhold nutrition and hydration, and you may be kept alive by artificial means. Your wishes regarding this can be customized in many different ways. I have seen clients place a number of days on how long they want to receive life support, and I have seen clients list certain medical conditions in which they would want life support removed. I have had clients want nutrition only, or hydration only, and some have expressed a desire to have alternative medicine measures tried before any life support is removed. Anything reasonable can be accommodated, as long as you put your wishes in writing.
Another document that you can use to express your wishes is a Medical Order for Life Sustaining Treatment (MOLST). This is a form that is filled out by you and your doctor, and is signed by your doctor. It goes through various types of treatments, when you would want them, and is much more detailed than a Health Care Proxy or Living Will. This is very useful if you want a very detailed plan for your care. If you don’t want to go to that level of detail, at the very least you should have a Health Care Proxy and make sure your agent know your wishes as to your care.
If you do not sign any advance directives, there is a law in New York that addresses health care decisions for individuals without a pre-designated agent appointed. The Family Health Care Decisions Act (FHCDA) provides a “default” prioritized list of individuals who may make health care decisions for you if you have not named one. The list of individuals, in priority order, include: a court appointed guardian; your spouse or domestic partner; your adult children; your parents; your adult siblings; and a close friend. The Family Health Care Decisions Act allows an individual to make end of life decisions for the patient, provided certain guidelines are met. Even then, the surrogate may not know your exact wishes and disputes can arise when family members or the doctor disagree about the decisions. When there is a dispute, the law requires all hospitals and nursing homes to have ethics committees to try to resolve the conflict. The dispute may be brought to Court if it cannot be resolved.
The bottom line is that you can, and should, plan in advance for your medical care. One's final days should be a time of compassion and support, rather than family turmoil, confusion and emotionally driven decisions.
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