There's a good piece in Globe today about a women dying of chronic obstructive pulmonary disease fighting to get home hospice care.  Despite the fact that it would actually save money, her insurer, UnitedHealthcare, says she has "used up" her hospice coverage.  Admittedly, she's been holding on for a while — most hospice patients die within weeks — and looks remarkably hail and hardy, but still.

Hospice care is an issue close to my own heart, since my dad's battle with cancer five years ago.  Home hospice allowed us to spend the last weeks of my dad's life with him at home, rather than in a cold, anonymous institution.  Hospice care also had an important psychological effect, touched on in the video that accompanies the Globe piece: when you sign off on it, you're acknowledging that you'll no longer be receiving treatment for the disease, but end-of-life care. It's an important physical, psychological and emotional transition for everyone involved.

It seems counterintuitive to healthy people, but the acceptance of hospice care by the patient lifts a heavy burden — from everyone.  It can be very empowering to finally take the reins and say "OK, that's enough".  In doing so, you essentially take your life back —if just in the nick of time — from hospitals and clinics, nurses and doctors blowing in and out and bloviating about what treatment they might want to try on you next. 

Not that there aren't good reasons for terminally ill patients to accept palliative treatment (if it is truly palliative), or to participate in medical research studies.  But there is a time when you reach the point of not just diminishing returns, but of no return.  Medical professionals are not always as helpful as you might think in helping you navigate this road, and sometimes I suspect they may steer patients who would be better off ceasing treatment into studies, essentially sacrificing the patients' well-being for what they deem the greater good of cancer research. 

Patients are made aware of the risks, of course, but once a doctor gets the go-ahead to use you as a guinea pig, it can bias him against giving you other options on down the road, when the landscape has changed radically.  There is a point with cancer — it was a few weeks before death in my dad's case — when the battle with the disease is clearly over.  The body is so ravaged there's obviously no going back.  Severe weight-loss, blown veins, the body's regulatory functions gone haywire — all of this means even the pretense of treating the disease has become untenable.  At that point the sensible thing is to stop fighting the disease.  You won't win, and a fight to the bitter end means you not only die, but you die bitter.  And that just adds insult to injury. 

For anyone who has witnessed the slippery slope of failed treatments and false hopes in the face of certain death, you have to question the authority we've invested the medical-insurance complex with, and lament a culture with no coherent concept of a "good death".  Death, like aging nowadays, is considered an unalloyed evil, and we are supposed to fight it tooth and nail, even if it kills us. 

That the Boomer Generation is more open about suffering from disease, even a terminal disease in its final stages, than their parents were is indisputable.  But you have only to look at Farrah Faucet's cancer home movies, broadcast in primetime on network TV, or a poignantly frail Patrick Swayze smiling desperately to dispell rumors of his death to see that however open we may have become about disease, we are still tip-toeing around death.  We don't want to talk about the inevitability of it, even when it's imminent.

Again, this is not to say that people shouldn't fight the disease.  Or that they should reject medical treatment where there is some reason to believe it will improve quality of life.  Farrah's Story, as kitschy and corny as it occasionally is, shows you how far tenacity in the face of terminal illness can get you.  But as determined as Farrah is not to physically succumb to her cancer, you can see how every aspect of her life is soon swallowed up by the disease.

And that's where hospice comes in.  Hospice sometimes allows a patient who has been robbed of precious life by the overwhelming totality of the disease and the culture of disease — to return briefly to real life again — not to cell-counts and treatment regimes, but to those things he or she loves in life.  To have fought the good fight, and to have made it home to die, surrounded by the people and things we love, is not a small thing. 

And on top of all that, it's a lot cheaper than dying in a hospital bed.