This spring, I spent 13 weeks as a primary caregiver for my brother Bob, who passed away June 17 from pancreatic cancer. When the doctors delivered the prognosis, Bob, only 68, a retired Salvation Army pastor, comforted them, explaining that he knew he was "going home," and would chose hospice care until then.
I didn't know much about hospice, other than they try to make you comfortable until the end, but I learned so much about this end-of-life process. This knowledge can help you give better advice to your clients about all of their estate planning needs.
Hospice is a service available for people who've been diagnosed with a life-limiting illness and wish to end any aggressive treatment in order to improve the quality of what is left of their life. Palliative services are available for people who have a life-threatening illness, but want to balance their symptoms and pain while they seek aggressive treatment. Either way, these options can help transition the patient and caregivers into the best possible care and comfort. Our hospice nurses taught us how to give medicine and comfort Bob in the way that he wanted and in his own home. (For more information on hospice, visit the National Hospice and Palliative Care Organization at caringinfo.org.)
Before guiding clients facing such a predicament, think about the advance directives commonly recommended to clients.
* Living will: Describes what medical treatments and life-sustaining measures you want or don't want with regard to a life-limiting illness. These include mechanical breathing apparatuses or tube feeding. This document generally becomes activated when a doctor certifies that you have an end-stage medical condition or are permanently unconscious.
* Medical or health care power: Designates an individual who is authorized to make medical decisions when an individual cannot. This is a good supplement to the living will since that document is focused only on someone facing imminent death.
* DNR: Specifically requests that CPR not be used if a patient stops breathing. This can be a stand-alone request.
The problem with all of these documents is that they generally do not reflect a patient's wishes in any detail and may not provide a medical designee enough direction to proceed properly. For example, what if doctors suggest dialysis, antibiotics or blood transfusions as part of a treatment plan? If a patient is terminal, would he or she want it? Will a health care surrogate know enough to make the right decision?
"So many people don't really understand what their living will or DNR actually says or how the medical community will interpret them," Bob's hospice nurse, Gina Miller, told me. "People often confuse a DNR with a living will. DNRs specifically decline resuscitating if you stop breathing or if your heart stops. Living wills go beyond a DNR but may not include withholding sustenance if that is what you want." She suggested we visit AgingWithDignity.org and read Five Wishes, which outlines the medical, emotional and spiritual decisions with regard to life-limiting conditions.
Following the advice, Bob, his wife and I discussed these five wishes and how he felt about them:
1. The person I want to make health care decisions for me when I can't Make them for myself. My brother was very clear that his wife could make all the medical decisions for him because he felt that she could follow his wishes. This is not true for everyone. My mother gave me her health care powers because she knew that her husband would want to keep her alive no matter what the circumstances. The best gift she gave me was to discuss her wishes in advance so that when the doctor informed us that they could increase her medications and keep her alive, in a coma, for about three more weeks, it wasn't my decision, but hers to say, "No."
2. My wish for the kind of medical treatment I want or don't want. This prompted us to discuss what "life support" meant to Bob. It described conditions like brain damage and coma and what we as his caregivers should do if this occurred.
3. My wish for how comfortable I want to be. My brother could tell us what he wanted us as caregivers to do for him. "I do not want to be in pain," was an important directive when we had to weigh keeping him more alert versus less in pain. He also gave us directions about music he wanted to listen to, his personal care, the need for massages and additional medicine.