When I read this mini-essay on taking care of a dying man and his wife, I was heartened that the sensitivity and compassion came shining through, but had to sigh that we're still so far from getting the hospice message to the medical community.
There are many reasons why people don't get those hospice referrals, and sometimes it can't be helped - death comes suddenly, the patient and family want everything done til the bitter end - but mostly, it's because we're in denial of death. Dying should come as no surprise to anyone, yet we seem to be taken off-guard by it daily. Physicians have a hard time breaking bad news, and feel that they have failed when there is "no more that can be done". Sometimes the physician feels that he or she *has* told the patient, but the way they told the person was so obscured with medical speak, the person didn't understand. Physicians are often guilty of telling the patient "1 + 1 = __ " assuming the patient will do the math.
When surveyed, people consistently cite fear of pain ranking first, and fear of dying in Intensive Care a close second. We can all picture the scene - all the lights on, limited family visits, no contact with another human body save a little handholding at best, tubes and needles, blinking lights and alarm bells, either impersonal care or a precious few seconds of reassurance from the staff. We see it all the time on TV, it's no wonder people think that their only options are either high tech or Dr. Kevorkian. Caregivers can picture themselves walking out of the hospital alone, wondering what to do next.
While it sounds like the man discussed in Al's essay got the best care he could have under the circumstances, if it had been at all possible, even he would most certainly have benefitted from being on hospice. We have a "rapid response team", if you will, at our hospice. We bring the patient home, even when they will only live for a few days or even just a few hours more. Getting the patient comfortable and surrounded by family is only part of the picture. Then it's the wife who will benefit from our service. The hospice will give her bereavement support for at least a year (this is a medicare requirement that hospices don't get paid for, by the way). This support can make a tremendous difference in the lives of the surviving care givers.
The woman who works half a day a week as a volunteer for me is an example. Her husband had been on our program for a very short time, yet we sent letters of support, helped her find a support group, and provided some telephone counseling. After about a year and a half, she wanted to see if she could help us - so she volunteers helping me with some mailings, reports, and presentation binders. She had a background in QA and takes great satisfaction in seeing the projects we're working on, knowing that she's contributing to them.
Every now and again, she and I will take a break over coffee and reminisce about our lives, talk about loved ones now gone, and help each other over the hurdle of the painful memories of the holidays. My dad and her husband died around Christmas time.
All this support lead from some hustling on the part of the hospital and hospice staff, a couple of weeks of care, a few mesely reimbursement dollars, and some paperwork. I think it's worth it.
