More on Hospice
Thank you for all your responses to my question about publishing these updates and the plain-sense.com blog posts. They were very encouraging and flattering. Of course as a social scientist I can spot response bias a mile away. Anyone who enjoys the posts and want to see them more widely distributed will take the time to send a note back to that effect. Anyone who thinks they stink or is ambivalent about them will sit back quietly and not make an effort to express an opinion.
Hey – that came out more strongly than I intended. Take two… I was really flattered by the kind words that flooded in yesterday and emboldened by them will take some baby steps to expand the audience and the topics.
However – I don’t see anything changing with the email update. Its original intent was to provide an efficient way to let people know how Betsy and I are doing. I’ll still do that and then post a copy on the blog for people not on this distribution list. I may add some additional posts to the blog, to help capture some issue and reflections that don’t come up naturally in reporting to you.
So, in my last post I promised some more information on hospice and life with this wonderful program. Their primary goal is to help gently and compassionately guide a patient to a comfortable, dignified, natural death. It is not really the same as the various forms of assisted suicide that we read about. In assisted suicide the family and patient take some asserted step that ends in death. For hospice the patient’s condition follows a natural course and the care givers just work to make the patient as comfortable as possible in this process. For those of you who followed the emotional conversation in Ashland last fall about the Oregon Death with Dignity law and the proposed restrictions to be imposed by the potential new partner, we could see a subtle but present tension between those in the audience with hospice experience versus those coming with the Death with Dignity agenda. Both groups brought loads of compassion but different approaches that sometimes got confused.
As a patient I’m “presenting” with these symptoms – less and less stable mobility, significantly swollen feet and lower legs; gradually increasing pain across my chest region (back side sort of, not along the front); decreasing appetite; shortness of breath; and pretty diminished energy levels. I’m still independent enough to get around in this house, attend to my toilette, sit at the table for meals, and go with someone on a car trip. And (most energetically) surf the web.
For a non-hospice patient this litany of complaints would result in lots of provider visits, drugs, scans, and therapy. The goal would be to “fix” the problems.
For me the goals are different so the treatment might be different. We know I have a limited amount of time to live. So, if giving me some opiods like morphine or oxycodone helps with the pain and shortness of breath, I can have about as much of those as I want. (not really true, but not far off either) There would be much tighter controls on refills and dosages if if I were not in the program.
So, what’s it like to be in the hospice program? Lovely. We have an RN case manager who drives the 25 minutes out from town at least once a week, and spends up to two hours checking in on me, asking and answering questions. She brings the new walker. She’s been in touch a couple of times during the week with my local primary care doctor. (They text each other about me…sigh…) She renews or has the doctor renew the necessary prescriptions, and every week leaves with a to-do list of people to contact, options to explore, etc. As she walks out to the car with Betsy I’m sure there are more conversations directed at Betsy’s needs – even though we talk about that during our regular session.
And I have a social services contact person in case I need help with insurance and other non-clinical issues. And they assigned us a volunteer who lives near by in case we need help with errands. Often a nurse calls during the middle of the week just to check in. And there is an effective after hours on call program. When I run a fever or my health deteriorates significantly Betsy can (is supposed to!) call and the team will jump into action.
It all comes down giving me gentle, compassionate support – letting me down gently. That’s different than the compassionate but more aggressive approach we can expect at a hospital.
Back to schedules…they barely know it yet, but up here we’re making mental plans to go to Philadelphia this coming weekend. Details to be worked out.