As some of you know, I lived in New York for a few years before finally returning to California to “settle” down. Those New York years were BIG years in my life: Got married. Had a baby. Witnessed 9-11. And in-between those milestones, I dealt with my father suddenly being given 2 weeks to live and being put on Hospice. Thanks to a holiday visit, I was with him when he was taken to the hospital, there when he was given the diagnosis, and stayed on there for the next (and supposedly final) 2 weeks to be with him and my mom. 2 weeks that turned into 3 weeks that stretched into 4 weeks….until it became apparent the doctors had not been quite right with their diagnosis after all. (Really? You think?)
During that time I learned first hand about Hospice and the services it provides. The doctors at the hospital mentioned it casually, after suggesting he have a feeding tube inserted in his stomach and be brought to the hospital each day (by ambulance) to have radiation. Choice A, Choice B, and oh yeah, guess there is Hospice as Choice C. And once we said Choice A and Choice B were not options for this 90-something year old stoic man (I mean, come on!) the doctor shrugged, told us to see the nurse to get the right forms and disappeared. He was done with us.
Why is Hospice so often an afterthought? Probably because most patients want to fight of course, and don’t want to believe they are really going to die. And doctors don’t want to stop treating their patients (often looked upon as “giving up”). More simply, as one leading doctor in palliative care told me: “Doctors view death as failure.”
Hospice is a fabulous program that you gain access to if the doctors have said you have 6 months or less to live. Sadly though, most people are on Hospice for an average of 2 weeks or less – hardly enough time to get to know your various caregivers, much less experience the benefits. (Why? See the reasons stated above). Two weeks would have been the case for my dad – IF the doctors had been right.
Instead, he got visits at home from a wonderful Hospice team, headed up by a young nurse whose gentle bedside manner and warm charisma made us instantly welcome her as the newest member of our family. We adored her – especially my dad – and I know he looked forward to her visits. And the irony of it all was that put on this program to die, he didn’t die at all. That’s right – instead of dying, my father held on, then slowly got better, to the point he eventually got kicked off of Hospice because he had lived too long. (Don’t even get me started on what I think about that!)
The upside is that he lived over a year and 2 months longer than those silly doctors first stated. The down side is that the last month or so of his life, he could have really benefited from Hospice’s help and soothing care – and he didn’t get it. I don’t fault Hospice for that; they were just following rules put in place by the Federal Government – who doesn’t always have the best intentions of the patient in mind.
I’ve been thinking about all this again because of an article I read in the NY Times about the palliative care doctor who instead chose to fight her own death to the very end (exactly the opposite of what she was offering and helping her patients with). Is it a case of “Do what I SAY, not as I DO?” I don’t think the answer is that simple. She was only 41. It is much harder for us to accept death in a young person versus one who has lived out a fairly long life. It seems to go against the laws of nature. But there comes a point when all that can be done to treat and cure has been done, and it is time to shift the focus to a more comfortable and less painful existence….and interestingly she was not willing to do this.
The type of care that works best for you is as personal as the type of underwear you choose to wear. There is no one size fits all option. But I think my father showed that choosing Hospice or Palliative Care does NOT mean you are giving up or necessarily shortening your life. On the contrary; I believe it was the type of care and attention my dad received from his fabulous Hospice team that helped him live so long and with a better quality of life!
My time in New York was like a rollercoaster of ups and downs….and yes, one of those downs was having my father die when I was 6 months pregnant with the grandson he would never meet. But thanks to Hospice, we had another whole year together – and to quote my dad as he explained why he made the effort to get up in the pre-dawn hours to say good-bye before I hurried off to catch my flight back to NY (the last time I saw him alive): “I wouldn’t have missed this for the world.”
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