The health care system's blind spots make it hard to die
When we get sick ... really, really sick ... all we want to do is get better, right?
Hospitals certainly think so. But, as a recent article on hospice care in the New Yorker points out, they’re often wrong.
“People have concerns besides simply prolonging their lives,” notes writer Atul Gawande:
“Surveys of patients with terminal illness find that their top priorities include, in addition to avoiding suffering, being with family, having the touch of others, being mentally aware, and not becoming a burden to others. Our system of technological medical care has utterly failed to meet these needs, and the cost of this failure is measured in far more than dollars. The hard question we face, then, is not how we can afford this system’s expense. It is how we can build a health-care system that will actually help dying patients achieve what’s most important to them at the end of their lives.”
When it comes to the people it serves, our health care system has a lot of blind spots, says DR. Leila Kozak, and often we’re most blind to the idea that not everything has a technical fix. “This is a huge problem,” she says. “Most people end up dying without the comfort care and psychosocial-spiritual support they need. Ask physicians themselves, ask the nurses, they’ll tell you that the system isn’t working.”
Kozak, a faculty member in Saybrook’s Graduate College of Mind-Body Medicine, studies the integration of evidence-based complementary medicine into palliative, end of life, and geriatric care. She’s received a Research Scholar award from the American Academy of Hospice & Palliative Medicine, and is the chair of the American Chapter of “Palliativos Sin Fronteras” (Palliative Care Without Borders).
She says our medical system fails the dying – along with their families, friends, and loved ones – for several reasons, the most basic of which is that blind spot: when prolonging life is no longer possible, hospitals often do not have the resources in place to offer the comfort and support the patient and families need.
“It’s amazing to think about, but death and dying is a new thing that’s only recently been included in the medical school curriculum,” Kozak says. We’ve done so much about advancing the physical aspects of medicine, we have an amazing medical science and ability to deal with the mechanics of the body. But we are not prepared to deal with patients beyond the physical body. A culture where death isn’t traditionally talked about is going to have a hard time with issues around the end of life, and may not be able to offer what patients want and need for their transition. For many years we have sustained a medicine that denies that there are other dimensions other than the phyysical to human life.”
As a result, not enough hospitals have adequate palliative care programs.
“You might think that palliative care is something that should be offered to everybody who is suffering from a serious illness, but the reality is that hospital based palliative care is highly underdeveloped,” she says. “It’s a new specialty. In fact, very new. Often such programs only have funding for a half-time physician or nurse doing pain management, a half-time social worker, and maybe a chaplain, but that’s not enough to meet the many needs of patients and families at the end of life. The only way patients and families can receive holistic palliative care in the USA is signing up for hospice.
Even then, she says, there’s a stigma that’s often attached – doctors and patients alike often view asking for hospice care as “giving up,” even though there’s fairly strong evidence that in cases of terminal illnesses the outcomes for patients receiving hospice care are better on most measures – not just comfort – than they are for patients who choose to stay in the hospital.
But perhaps the most challenging problem is that the medical system has yet to incorporate into palliative care the full range of comfort care interventions that we know can support patients and their families at the end of life.
“The system is stuck: even if doctors and nurses the best intentions, they still may not have the resources available to offer their patients,” Kozak says. “Usually patients do not get to hospice until it is very late in the process. As a result, the last days of life are consumed by a sense of crisis, rushing and doing. Studies have shown people expect a peaceful dying, surrounded by family and hopefully at home or at a familiar place. Instead, many may die hooked up to machines and their family members even afraid of touching or holding them.”
For all that, Kozak says, there is a change happening – and it looks to be big. The New Yorker article is a sign of that.
Some of this change comes from patients themselves. “You see a lot of work done now with advance directives, people writing down what they want to happen to them if they cannot make a decision themselves,” Kozak says.
Some of it comes from better research on the results of different kinds of care and what people expect from the end of life.
And some of this change is coming from medical schools, where training in palliative care is expanding ... and there’s a growing realization that doctors should be better trained to have difficult conversations with their patients, such as those involving you want to die.
But the most visible change, according to Kozak, is coming from the remarkable medical practitioners who have broken through these barriers on their own, without any help from the system that trained them, to make a human connection and offer better medicine.
“This is an area of medicine where you find the most amazing care providers, amazing doctors, amazing nurses, social workers, chaplains... my experience in the field has been that this is group of incredibly caring people, who are extremely dedicated to the holistic care of their patients and their families,” Kozak says. “They’re making a revolution happen.”