About 10 days ago, with the agreement of my doctors here in town and the begrudging acceptance of my NYC oncologist, I decided that I am no longer strong enough for chemo and have chosen best supportive care, pain management and to begin interviews with hospice. The learning experience that has followed making that decision has, I confess, thrown me for a loop.
There are some – friends, family, other patients – who have asked me if it’s too soon, if I was just feeling depressed at my slow recovery from the blocked kidney and nephrostomy tube placement. Now, 10 days after making the decision, I can say maybe. But I do know that my decision to stop chemo was the right one, and as Dr. Personality so directly pointed out, as soon as I stop chemo, the tumors will grow and my pain will increase. I know that without the kidney issues, I might have several months left – but kidney blockages added to the mix are game-changers that mean I’m at much higher risk and could deteriorate much faster with less notice.
What I wasn’t prepared for at this point in my dance with cancer is to get the impression from the hospice facility I’d very carefully researched that I’m not quite sick enough. Why? Because I don’t fit their patient profile of someone who is within days or hours of end-of-life.
Although this is a well-respected, carefully chosen local facility, they apparently prefer to concentrate on patients who are in immediate danger of dying, rather than patients who know they are out of options and want to live out their days surrounded by responsible health care and professional caregivers.
If I wanted to die in my living room and had family and friends to take care of me 24/7, I’d have fit their more popular model of caregiving. But if I want 24/7 care provided by a facility, and I’m not due to die within a couple of days, it looks like I will have to consider extended care, nursing home type facilities. Not what I wanted. Not what I planned for. It doesn’t matter that I have good insurance and private money.
But apparently, depending on the services provided by hospice groups in your location, dying with dignity isn’t about what you prefer as much as it is about what hospice prefers to provide.
And the learning experience continues.