Monday, August 4, 2008

Hospice Care

Everybody thinks of Hospice as a wonderful organization caring for the terminally ill. I have a very different perspective.

A volunteer from Hospice (100% covered by Medicare) comes in every day to do things for my father, like bathe him, change him, shave him, brush his teeth – all things we are already paying others to do.

It’s a bargain with the devil. Because to be in Hospice care means you receive no pro-active medical treatment. You receive only palliative care. That’s fine (perhaps) if (a) you know what the medical problem is and (b) you know for sure it is terminal and (c) it cannot be successfully treated and (d) the patient is in misery meanwhile.

But none of that is necessarily true in our case. Nobody knows what’s going on with Dad, or whether it may be treatable, even perhaps quite easily treatable. Nobody’s finding out. He isn’t in a hospital; he isn’t having any tests (except to determine whether he has another urinary tract infection: negative.) He isn’t miserable. (At least, that’s what we’ve been telling ourselves for the whole time, over a year now, that he’s been in this nursing care facility: he isn’t unhappy; he’s mostly content. Okay, he has some unhappy moments; who doesn’t? But overall, he’s too ‘out of it’ even to be unhappy. So we’ve been telling ourselves. Now all of a sudden he has no quality of life, he’s miserable, there’s no reason to “prolong his life.” Withhold any life-saving treatment.)

The worst of it is, if we’d had this discussion years ago with him, he would have felt the same way. A person's perspective may well shift once he is actually in the situation (I remember my young mother, who is 84 now, repeatedly saying she hoped someone would administer cyanide to her on her 80th birthday.), but it’s too late now to ascertain whether Dad himself still buys into this culture of death.

Ah, this culture of death, administered by the priests and priestesses from Hospice!


Ioanna said...

Ugh...what a horrible time to have to go through.

I'd encourage you to pursue having someone truly examine your Dad to be sure that there's nothing more than can truly be done, and then to simply let him pass peacefully. This is the entire point of hospice - helping an individual as well as the family go through that transitionary time that is the end of one's life.

My Mom cared for her Aunt in their home, letting her stay in my brother's old bedroom. When it was time for hospice, it was an overall good experience and my Aunt was able to repose peacefully and with loved family members near.

My Dad's Mom is approaching her own time. However (this is why I'd encourage you to seek out someone to examine your Dad), my Dad flew out to see her the same day the Doctor said that if anyone was to see her to do so quickly as he gave her a week to live (the trip was all ready planned). While my Dad was there he realized they had her on a liquid diet, and once he found out that she could eat regular food - she improved almost immediately. The 'warning bell' was from her blood sugars going every which way from not getting actual food in her system. Granted, they'd all ready had to amputate one leg (blood clots) and she's got dimentia in a major way but she's been given more time so more family can see her. Also, my Dad is a labratory technologist so he was able to look into things that a nonmedical-type simply may not think/know about to do.

I can't begin to understand what you're going through nor am I going to claim I do. You and your entire family will be in my prayers during this assuredly most difficult time.

Anastasia Theodoridis said...

It's Catch-22. Can't have a doctor examine Dad (as I understand it, maybe I'm wrong) as long as he is a hospice patient.

Why not just take him out of hospice care? Not my call. I don't hold the power of attorney.

James the Thickheaded said...

Once upon a time, I served on the board of a well-known nursing home here in town. Given my background, they put me on finance. After a year of the most excruciatingly detailed micromanagement, I "transferred" to the ethics board. Medical ethics. I learned a lot. Much was very good, but sadly, there is a thing in medical ethics that I found dismaying: the ultimate mandate is that the primary directive (ethic) is to protect their doctors rather than to serve their patients. I understand this from the grand schema-type thing that if we don't protect our doctors, we don't have doctors and if we don't have doctors, we can't help patients... but it leads to funny places sometimes. I would mention things like, "Y'know it plays a bit different on the front page of the Post... and we shouldn't lose sight of that." But this is not what they want to hear. Quickly the directive was changed so that only medical professionals could be on the ethics board. I addressed my concerns with the chair, and then resigned from the whole of it shortly thereafter. I'm afraid we're in a mess with the whole of it. Cost drives folks to funny places... and ethics are driven by fear of the Inspector General.. again... rather than the patient's best interests.

That said, there are wonderful people in these places. The hard part is finding them. Some of the folks in Hospice... I'm not so sure of it. Our place has originally intended the 3-fold Hospice model the Brits 1st pioneered. Medicare killed this - as I think it only pays for 30 days or so. Not enough.

I regret this problem will ultimately impact all of us somehow, and that you bear it now.