Posted on: 2013 10 23
Many thanks to Don W. Stake of The Community Hospice located in Rensselaer, NY. I appreciate his thoughtful post and hope you will too.
There are basically two kinds of people in this world: One small group of folks who have had some personal experience with hospice care, and therefore really get what it’s all about; and the other large aggregation of those who haven’t a clue what hospice means, or “know” a lot of things regarding end-of-life care that are plainly fanciful and simply aren’t true. And never the twain shall meet.
Those in the latter group learn their fictions from the culture in which we live. The normal process from birth to death is studiously ignored. Youth is idolized, while age is neglected and even rejected. Death is reduced to entertainment on the screen in home or theater. Commercial products feature creams to reverse the aging of skin, and medications that fend off the aches and pains that come with the passing of years.
So the very notion of hospice care, of doing compassion to one who is on the way out, is beyond the grasp of many, if not most people—all of whom will ultimately have to come to grips with their own mortality.
But that’s a long way off, they always hope, and they don’t need to deal with it now. Procrastination on this subject is for them a virtue. Not now. “Later,” they say, “when we have to, that’s when we’ll deal with it.”
It is this cultural bias and personal blindness that keeps so many people from understanding that hospice is really not about death and dying. Rather, the end-of-life compassion of hospice care makes the experience all about living.
The main question for each of us is, “How do you want to spend the rest of your life?” For one with a serious illness, “the rest of your life” is measured in months, maybe weeks. And those who bring care to the person want to do what they can to make that short span of time remaining as full of life as possible.
The quality of hospice care that sets it apart from every other type of medical service is that the patient is seen as a whole person: not only a physical being, but one with a mind and emotions, a person with values and convictions. Body, mind and spirit add up to a complete person.
In order to deliver genuine care to such a multi-faceted being, hospice does it by means of a team of people. Medical specialists, doctors and nurses, of course, will be primarily concerned with physical conditions causing pain and discomfort. But they know very well that there’s more to which they will pay attention. For ideas and feelings and relationships can bring help, or perhaps hurt.
So the team includes social workers to help with complicated feelings and suggest resolutions. Chaplains offer support during the patients’ pondering of spiritual questions and convictions. Particular services geared to the needs and desires of the patients and families—a hospice aide to help with home needs, specialty therapists bringing art, music, massage or other physical treatment –bring personalized care.
And then, also an important part of the hospice team, there are volunteers. After 25 hours or so of training, a volunteer is ready to befriend a patient and family members. Well-prepared volunteers are paired with patients to listen and share life’s laughter as well as laments. It is always a companionship that is supportive to the patient and filled with blessings for the volunteer as well.
Beyond a doubt, the most important member of the team is the patient. The dignity of decision-making is essential so that the plan of care produces the quality of life the patient needs and desires. Family members also may chime in on some issues, but always it is the patient who rules and has the final word.
With this teamwork, patients and caregivers alike learn what’s vitally important about living. Not just for the last weeks or months, but for all of life. Priorities quickly become crystal clear. What doesn’t matter flutters to the floor.
That is why in our newsletters we feature stories of our patients, who teach us lessons to live by. We are reminded that “the rest of our lives” starts right now, and we all are politely prompted to live life to the fullest—to the very end.