What Should Hospice Look Like?

I visited a friend in hospital recently. She’s nearing the end of her life, and she’s been having an ongoing negotiation with the hospital staff about what that’s going to look like — she recognises that she’s dying and wants to do so relatively peacefully, preferably in the comforts of her own home. Some of her doctors want her to pursue more aggressive measures to see if it’s possible to extend her life or even achieve remission. Others have recommended a referral to hospice, where she can live out her remaining days in a facility that focuses on offering care to the dying. She’s conflicted, and she’s also trying to battle the conflict within the group of people caring for her, all of whom mean the best, but are approaching the situation from different perspectives; to have a patient die is to fail, to have a patient choose to be empowered is to succeed, to fail to keep a patient comfortable is a nightmare.

We talked over the flowers I’d brought her in an attempt to make her hospital room less grim, ambling through lines of conversation about nothing in particular. It wasn’t so much that we made a conscious effort not to speak about what was coming, but that we circled around and through it, remembering our times together and accepting. She had lived a long, full life, and while she would rather not be dying under those circumstances, precisely, she knew that you don’t get to pick and choose, and she didn’t recoil from the facts. It would be all right in the end.

Another friend of mine is a hospice physician, taking it on as her job to provide end of life care. We talked over dinner the other night about how the nature of hospice is changing, shifting from comfort care only to an expansion of treatment options; the goal is not necessarily to treat a patient as someone who will be dead within two weeks, but to respect the patient as a living person who deserves access to care. Who may live more than two weeks, who may even, unexpectedly, recover or go into remission, making it possible to go home or move to a different facility. The options in terms of hospice care are opening up radically for patients, creating a much better landscape.

What does hospice look like now? What should it look like? Our deep fear of death and dying in US culture is a direct contributor to the way we hide from it. My friend in the hospital had few visitors, especially after the first few days: Once it became evident that she was dying, people seemed to think it was catching. Those who did visit would stop by for an awkward few minutes, shuffling around the small room and trying to ignore the accoutrements of hospital life, the life support equipment and the huge bed, the nurses drifting in and out in response to IV alarms and in accordance with mysterious schedules all their own. The quiet hum of the larger hospital behind us, footsteps in the halls and equipment and that deep, hospital smell.

Even in the nicest of hospitals, there’s that hospital smell. It changes from hospital to hospital, of course, but you can identify it the minute you walk in the doors. Your hackles can’t help but go up, much like a dog at the vet’s — that raising of hairs, that uncontrolled growl, that digging in of your heels at the door to the office. You know that something unpleasant and uncomfortable is coming, if not for you, than for someone else. The desire to flee from hospitals is understandable, but when someone’s trapped inside, I choke down my instincts and pass through the doors nonetheless, setting aside my needs for the common good. Not everyone can do that, of course, but those who can often fail to do so.

Whether at home or in a dedicated hospice (dying in the hospital can be a deeply unpleasant, drawn-out, terrible process, since hospitals are built to sustain life, not to allow it to naturally flutter and gutter out, like a candle satisfied with the life it has lived), dying is becoming more complicated these days than it ever was. So are grief, and the the processes of responding to death; we live in a time where you can enter a hospital room and see someone apparently breathing and yet be told that the person you see before you is dead, even though this is palpably, clearly, manifestly untrue, for, surely, a person who is breathing is not dead! Who would say such a thing!

The reshaping of hospice as an institution is something that holds tremendous progress for us socially and in terms of health care, and it makes me sad for those who didn’t get a chance to experience these changes, as well as happy (in a bittersweet way) for those who will be able to take advantage of better hospice care options. Death should not be something confronted in terror and sharp smells and misery; it should be something that people meet with support and kindness, and care appropriate to the level of treatment they want. Maybe they want steroids and antibiotics and a gamut of other treatments focused not on healing them but on keeping them reasonably comfortable and well-treated as they face down death. Maybe they just want pain management and friendly nurses and doctors, visits from people they love, or the chance to go home and be in their own bedrooms.

Maybe they want their pets to be allowed into hospice, or they want to interact with therapy animals. As the nature of death changes, the fundamental desire for solace and the fear of confronting the unknown have not — even my friend, dying, patiently waiting to fight it out with her medical team, expressed a note of fear. How could she not?

Image: Who said communication requires a language?, Vineet Radhakrishnan, Flickr