Here is the best thing on closed circuit television this week:
Atul Gawande and Amy Berman at Senate Special Committee on Aging
Start at 31:55 and end at 55:25. If you are as pumped as I am about a Senate hearing on aging I’m sure you don’t mind cueing the thing up yourself.
From Medline, a quick intro to the un-introduced:
Palliative care is treatment of the discomfort, symptoms, and stress of serious illness. It provides relief from distressing symptoms including
- Shortness of breath
- Loss of appetite
- Problems with sleep
It can also help you deal with the side effects of the medical treatments you’re receiving.
Hospice care, care at the end of life, always includes palliative care. But you may receive palliative care at any stage of an illness. The goal is to make you comfortable and improve your quality of life.
Our health care system is based on the curative model of care. But you know what? I can’t think of one single patient in my given short tenure in ICUs that was curable. We patch people up. We send them back out into the world to manage their health. And we think maybe the next exacerbation will be the one that ends them. Or maybe we’ll treat the same COPD/heart failure 25 more times before the angels call him home. Maybe 100 more ICU days billed. 100 more days spent being woken up for vitals q.1 around the clock, catheter in the bladder, 6 or more needle sticks a day, uncomfortable bed, bad TV, worse food, and exponentially multiplying chances of acquiring a hospital infection.
When I have a very sick patient coming to the end of a long and painful (and expensive) road I am driven mad by the pain and sometimes harm we cause to extend life, or better stated, delay death. I’m a conscientious objector to placing naso-gastric tubes up the noses and through the pharynx of barely conscious patients on 3 vasopressors with ejection fractions of 10 percent. No tube feeding in the world is going to contribute to that person’s well being, but it will certainly hurt like hell. And we charge for the pleasure.
But hear the good news. We are doing better at starting to consider patient quality of life as part of care. The provision that got cut from the original ACA came back last year with CMS approving a reimbursement for end-of-life discussions. We work within the fee-for-service model. Talking about what you want from your care gets a ICD code and Medicare will pay your doc. This victory though seemingly small, is prized.
Next up for change, and this where Gawande and Berman come in as expert witnesses, is better access to palliative care and its use alongside curative care. These two care models act like enemies when I see an end-stage liver failure patient’s palliative care physician’s orders being DC’ed by the attending, then vice versa, and we go round and round. But they can cooperate. A patient with serious illness (heart failure, COPD, cancer) should not have to make the either/or choice of “fight” with aggressive interventions (multiple surgeries, 2nd and 3rd line chemo) or “give up” with comfort measures only (let’s be sensible and keep antibiotics and say a blood transfusion on the menu). Choosing what your goals are for the remainder of your life, if it’s 3 months or 15 years, and having the right to adjust that choice requires the care of both palliative trained and curative aimed practitioners. Most people want to be comfortable and home in their last bits of time. Pet their dogs and eat food not through a tube and smell flowers (no flowers allowed in the ICU). Very few people want to spend half a million dollars having their body flogged with futile care. But we do have to talk about it before it happens. And as Gawande says, with the same words used time and again by children of the intubated parent who don’t know mom/dad would want, it’s always too early to talk about it until it’s too late.
So proposed changes:
Professionally–better training for doctors and nurses in the provision and goals of palliative care. Before he wrote his book Dr. Gawande didn’t know what it was. Let’s get on that professional organizations, universities, health systems. Nurses IMHO are very progressive when it comes to palliative care. And great educators.
Politically–Some Medicare policy tweaks:
- Medicare will not reimburse for any curative treatment after a patient elects hospice care. As a patient, that choice is scary. And unnecessary. Provision of both types of care could prevent overly aggressive and expensive care chosen only because the alternative was nothing more than symptom management. Middle ground, y’all.
- Home care is only reimbursed when a person is terminally home-bound. Where do people go when they aren’t there yet, can’t afford home care, and can’t take care of themselves? The hospital. What’s more expensive and less comfortable than home care? The hospital.
- If you should need hospice, Medicare requires a minimum 2 night stay in a hospital before giving approval for reimbursement.That seems like a typo, right?
I have no conclusion aside from knowing that progress is being made and being damn proud of it. And I’ve trumpeted my love for Atul Gawande across the land and sea, but standing ovation for Amy Berman. What a nurse. She writes beautifully, too.