Here at NHPCO and the Hospice Action Network, almost all staff members have direct hospice experience. We count among our numbers people who used to run hospice programs, people who were nurses or administrators at hospices, and almost everyone here has had a relative or friend who spent their last days, weeks or months in the comfort of a hospice care team.
My grandfather died in a hospice program on Long Island in 2004. At that point, I was working full time as a traveling stagehand and couldn’t make it back to be with him in his final days. My parents and family were exhausted from all of the time spent caring for my grandfather while he was in the hospital. When my parents told me he was going to be transferred to hospice, I could hear the mix of relief and sorrow in their voices over the phone. I think they were realistic— my mother was a C.C.R.N., and she had been prepping everyone for what was coming. I know that my grandfather’s time in the hospital was tough – my Dad told me a story about coming back to my grandfather’s room, finding him not there and literally chasing the doctor down who had ordered another round of x-rays. I wish I could convey to you the frustration in my Dad’s voice when he was retelling that story – the exasperation of knowing that he was seeing his father in his last days and having to find the 25 year old intern who hadn’t even consulted with the family before ordering yet another expensive, unnecessary test.
That’s most of what I know about how my grandfather passed.
I share those two anecdotes as a sort of preamble to the rest of this post. In October of this year, I visited Gilchrist Hospice to get a full picture of what a day in a hospice is truly like. When I visited Gilchrist, I didn’t know quite what to expect. After almost a year of working for the Hospice Action Network, I was familiar with the idea of hospice, but I didn’t have a good grasp of what hospices did day-to-day . Angie Truesdale, our director of public policy, suggested that it would be worthwhile for me to spend some time observing what hospice truly offers its patients. I could walk you through my whole day, but I don’t want this to be a sort of ‘how I spent my summer vacation’ blog post. Instead, I’d like to share a few little snippets of the day.
-When I first walked into the corporate office, they showed me the referral room, and mentioned that this room was staffed 24 hours a day, and was on its own independent power with a backup generator. It may seem funny to hospice workers who work around the clock, but until then, I just didn’t think about the fact that the referral to hospice care could come at any hour of the day or night.
-In the inpatient facility, every room had natural light. There were no shared rooms. In each room, the medical equipment (oxygen, etc), was as discrete as possible. It was built into the cabinets and actually had to be pointed out to me before I saw it. Each room had a lounge chair, which was a pull out bed. There were clearly no set visiting hours.
-At the Interdisciplinary Team Meeting, I was surprised at the passion and candor with which the staff handled some tough situations. When the team social worker was talking about some at-risk family members who might need urgent grief counseling, it was amazing to see the doctors and pharmacists chime in with their observations on the patient’s family and what sort of counseling they might need. My own biases led me to believe that most doctors don’t focus on areas outside of their medical expertise. It was refreshing to be proved so wrong in this area.
-I sat with a social worker as she talked to a patient’s daughter. The woman was very realistic about her mother’s condition, but only had one or two small requests about meals. The social worker went out of her way to ensure that the nursing staff and the cooking staff knew about these requests.
-I was able to enter a patient’s room with a nurse while she performed a checkup. The family said that the patient had enjoyed a glass of Jameson in his better days, and asked if they could bring in a little mini-bar sized bottle of whisky with which to dab his lips occasionally. The physician went so far as to write this up in the course of treatment so that the night shift would know about it and be able to give this man a little bit of comfort in a way he enjoyed.
-The social worker talked about the services held in the chapel, even during the snowstorms in February when most of the D.C. Maryland area was shut down. She talked about staff sleeping on couches and stoically working hour after hour because nobody could get to the hospice to relieve them.
-I remember seeing a family member asleep on a couch in one of the big common rooms, and another member walking in with a pizza. They were able to sit in a little kitchenette and share a meal and a moment’s rest. The area had been designed with this in mind — this family didn’t have to sit in a hallway or a waiting room, there was a comfortable nook expressly for them.
-One patient was in his room, fully aware and chatting merrily away with his grandson and wife- his spirits were high and he was even wearing a t-shirt from his college over his gown. There was no sadness that I could see – only family enjoying one another’s company.
I could keep going. I think the biggest thing I took away from the day was how truly different the philosophy of care really is. Patients and families in hospice aren’t seen as ‘casework’, nor are they pitied – there is honor, respect and true compassion here. When I think of my father – a man whose emotions are usually reserved – running down a crowded, sterile hallway to stop a pointless, expensive set of x-rays, it sets my blood to boiling. My grandfather didn’t need that test, he needed comfort and peace and freedom from pain. The fact that someone with a quarter million dollar education didn’t understand my grandfather’s needs points to the huge disconnect between what medical care we can provide in this country, and what care we should provide.
I know I’m preaching to the choir on this- if you’ve clicked through to our blog, you most likely agree with the hospice philosophy. Here’s the next step, friends – let someone else know. Tell one of your friends who might not understand what hospice does about your experience. Tell the people making decisions about how we practice medicine in this country about hospice. Tell your lawmakers at every level. Tell your city council, your state legislators, your Congressmen and Senators, tell the President of the United States. We call ourselves the Hospice Action Network, and although we’re all busy we must take the time to advocate for the better model of care that is at the heart of hospice.