The final journey begins the day you realize your loved has taken a turn for the worse and is declining. You find yourself calling the doctor more frequently reporting health status changes. The doctor and staff agree there are changes. You wonder if the decline is going to continue or if there will be a return to better health. You don’t want to think about what a continued decline means. It is too hard. Then one day, the doctor or staff member, probably the social worker, approaches and says “Have you thought about Hospice?” For just a moment your world slows down and you realize, there will be no return to better health. Your first reaction may be is there something to be done medically that hasn’t been done? It is natural. It is not wrong to ask the question or seek further medical opinion.
In the best case scenario, a conversation has occurred with your loved one about end of life issues. This would include whether you have a “Do not resuscitate order”and a Living Will is in place. These documents allow for no extraordinary measures to be taken if that is desired. Your wishes are usually respected but in some situations, The EMTs or hospital will make their own decisions. You need to have a copy of these papers.
Hospice can be a wonderful experience even for people in nursing homes/assisted living and especially in the home. The purpose of hospice is to provide comfort for the client and family as well as the best possible quality of life for the client. Hospice can provide wonderful emotional support at a very difficult time. A good hospice will relieve some of the burden. It takes a certain kind of person to work in hospice. This person understands the suffering and pain for all involved with death and dying and works to create environments of compassion, patience and support.
There are specific criteria for services. There usually has to be a diagnosis of six month till the end. Many insurances cover hospice including medicare. Not all hospices are the same. The most important is the medical, emotional and spiritual support to be provided. Here are some questions to ask.
Who is on the hospice team? MD, RN, CNA, social worker, spiritual counselor? Do I get to choose what services will be available? Is a nurse oncall 7/24? Does an RN visit daily Will I still use my primary care or is there a hospice doctor? Will there be an aide or supportive care? Will hospice honor the families wishes? Especially about pain control? Do you have any references or families I can speak with?
One of the critical aspects of any agency is their reputation. Ask your friends, PCP and colleagues. I good recommendation is the kindness and compassion for the client and the family as well as response time for any calls.
Hospice in a nursing home/ assisted living facility can be more difficult. The facility may have an arrangement with a specific agency. It does not mean you have to use them. Medicare provides hospice services with limited aide care. If the situation becomes critical, round the clock aides will be provided under continuous care. This will be maintained until the situation stabilizes, or hospitalization occurs. As an advocate, I am vigilant with the hospice team to make sure the facility patients are getting the proper care. It doesn’t always happen as I like.
There is a wonderful article in the most recent issue of The New Yorker by Atul Gawande. He is a surgeon in Boston and speaks to the issue of Hospice. http://www.newyorker.com/reporting/2010/08/02/100802fa_fact_gawande . I recommend it!