It rarely is easy to start a discussion with a loved one about end-of-life care. Yet stories in the news of family and court battles over the wishes of patients who cannot speak for themselves demonstrate the importance of beginning the conversation with loved ones.
Advance directives express requests and choices
Advance directives describe a person”™s wishes about health care and financial matters in the event of a critical and life-threatening illness or condition. These directives can include a health care proxy, a living will and a power of attorney.
The health care directive provides doctors and family members with a plan as to the type of care one wants in the event that one becomes seriously ill and cannot communicate his/her wishes. Even healthy adults without known medical problems should consider drafting a health care directive, which will aid in decision-making regarding levels of care.
The living will addresses desired levels of care and quality-of-life issues when a certain defined threshold of functional activity or illness has been reached. A health care proxy names a person (such as a family member, friend or professional) as an agent who can sign documents and make decisions if one becomes unconscious or lacks the capacity. If the condition is temporary, an agent will be needed only for a short period of time.
Starting the conversation is essential
According to elder law attorney Michael J. Amoruso, discussions with loved ones regarding advance directives should not be placed on the backburner.
“Unfortunately, people tend to delay discussing advance directives with their loved ones because the topic of one”™s mortality may be uncomfortable for some,” says Amoruso, an attorney with Amoruso & Amoruso L.L.P. in Rye Brook who serves on the board of directors for the National Academy of Elder Law Attorneys, was chair of New York State Bar Association Elder Law Section and was president of the New York chapter of the National Academy of Elder Law Attorneys.
“Without these documents, however, if an individual becomes incapacitated or incapable of making decisions regarding their care or finances, the family will have no choice but to commence a guardianship proceeding in court to have a guardian appointed to make decisions for them. That process can add unwanted stress on the family and can, if contested, amount to thousands of dollars.”
New York state has developed simple advance directive forms that are available online and through hospitals and other health care providers. These forms should be filled out thoughtfully and thoroughly.
“It”™s not enough for an individual to express a general desire to avoid being sustained by machines,” Amoruso says. “The advance directive needs to explicitly spell out the person”™s wishes as they pertain to specific circumstances that may affect quality of life, for example, partial or complete paralysis from a stroke, inability to recognize loved ones because of Alzheimer”™s disease or dementia or stages of a terminal illness. It should include directives not only about ”˜extraordinary means,”™ such as machines, but also regarding artificial nutrition and hydration in the event that the person cannot eat or drink independently.”
Families often need assistance from an attorney, hospice professional, or other professional with expertise in drawing up advance directives to ensure that the documents are written with sufficient detail and clearly express the person”™s wishes.
Look for opportunities to begin the conversation
While it may be uncomfortable to begin the conversation, you may want to bring up the topic after a doctor”™s appointment for a checkup or to treat an illness. A meeting with a financial advisor about a retirement portfolio offers a natural segue into a conversation about estate planning and advance directives. The topic could be brought up during or after a meeting with a family or elder care attorney. Family members may even want to suggest privately that the attorney start the discussion.
Advance directives are best addressed when a parent or loved one still is healthy and can clearly express wishes and desires. In this way, loved ones can face critical or end-of-life illness with grace, dignity, comfort and compassion.
Mary K. Spengler, MS, is executive director of White Plains-based Hospice & Palliative Care of Westchester, which provides comprehensive end-of-life health care services to people with a serious or life-limiting illness and provides help to their families. For additional information, visit hospiceofwestchester.com or call (914) 682-1484.
