Posted on | January 16, 2014 | 4 Comments
Last week, as part of research on a long-term project, I read Pete Hammil’s terrific novel North River. It recounts the experience of a fictional doctor, James Delaney, in New York City in the 1930’s.(1)
In one passage, Hamill describes Dr. Delaney this way: “He was a doctor, but medicine was not an exact science. There was no cure for everything. As in life. The cause of death was always life. Across many years now, he had comforted people he knew would soon die. He hoped his consoling whispers would do them no harm. He hoped too that he could reduce their immediate pain. But he could not carry them around in his head like luggage. He had to examine them with all the intensity he could muster, do what he could, avoid harm, and then forget them.”
That passage, reinforced for me now, 80 years later, that we have made great progress in medicine. And yet the challenge remains how best to systematically support the complex patient-health professional relationship with costs and benefits for both parties.
On January 29, 2014, in Washington, D.C., I’ll be participating in a forum hosted by Assistant Secretary of Aging, Kathy Greenlee, titled “The State of Palliative Care Across Settings: What Can We Do Together?”(2)
I expect that day long program will mine the very issue that “Dr. Delaney” raises above. Namely, faced with incomplete knowledge, resources, and understanding, how do we ground and define an evolving and dynamic system of care so that all parties maximize their potential for good?
Why palliative care – what is it and how can it help?
Palliative care is an inclusive team approach to care with a strong emphasis on planning. This philosophy of care begins with the care team eliciting the concerns of the patient and loved ones.(3,4)
What is important in the patient’s life? What more would he or she like to achieve? Is there something he or she fears worse than death?(5) Concerns expressed during this conversation help define the patient’s value system. Studies have found that patients almost always express the desire for more effective communication with a care team that is comfortable dealing with uncertainty and complexity. It’s important for the care team to tailor care to the patient’s individual needs.(6)
Palliative care is remarkably focused and pragmatic. For example, if I place myself in an aging patient’s shoes – multiple diseases, some compromise in capacity, but an uncertain prognosis – priorities become more obvious. What do I need? What must I ask of my caregivers? First, relieve my suffering. Second, improve the quality of my life. Third, manage my pain and other symptoms effectively over a long span. Fourth, while you are caring for me physically, don’t abandon me psychologically or spiritually. Help me grieve my losses. Fifth, be sure to coordinate this as a team effort, remembering that my family and I are part of the team.
At the end of the day, the patient seeks enough comfort to contribute to loved ones’ lives, enough resources to not be a burden to family and friends, and enough strength and capacity to control one’s own life.(7)
How would a focus on Palliative Care benefit the build-out of a preventive, home-centered health care model for all?
All individuals, regardless of age and health status, should be able to voice their personal needs and define their long-term and short-term goals. Evaluation should be thorough on the front end and take into account what patients define as excellent outcomes. Team approaches should be utilized, and the home should serve, as much as possible, as the center of care. Care should be well planned, based on these expectations, and discussions should be summarized in a formal planning directive, leaving little to chance. Trusted home health managers, both formal and informal should be identified, and integrated into the health care team.(3)
Were we to embrace such an approach, what would we find? More joy and pleasure; less pain and worry; less hospitalization; greater patient and family satisfaction; greater caregiver health and well being, and, in the end, a greater likelihood of a life lived to its full human potential.
One of the great obstacles in moving to this approach is the mindset of the health professionals themselves, established through training programs and non-supportive systems of care. As Hamill says of Dr Delaney in the 1930’s, “There were too many people to ever know them all…He met them in the present but each of them had a past. Deal with them, gently if necessary, and then seal them out of memory. They could vanish like the words of a song, recovered only in isolated fragments.”(1)
Unsealing the memories and connecting the fragments is what a palliative care approach is about. It certainly holds great promise for patients – but perhaps even more so for the health professional who have been entrusted to deliver their care.
For Health Commentary, I’m Mike Magee.
1. Hamill P. North River. Little, Brown & Company; NY, NY. 2007. http://www.petehamill.com/books/northriver.html
2. The State of Palliative Care Across Settings: What Can We Do Together? January 29, 2014. Washington, D.C. http://www.practicalbioethics.org/events-education/events-calendar
3. Morrison RS, Meier DE. Palliative Care. NEJM. 2004;350:2582-2590.
4. Field MJ, Cassel CK, eds. Approaching death: improving care at the end of life. Washington. D.C.: National Academy Press, 1997. http://www.nap.edu/openbook.php?record_id=5801
5. Quill TE, Perspectives on care at the close of life: initiating end-of-life discussions with seriously ill patients: addressing the “elephant in the room.” JAMA. 2000;284:2502-2507.http://jama.jamanetwork.com/article.aspx?articleid=193269
6. Tulsky JA. Doctor-patient communication. In: Morrison RS, Meier DE, eds. Geriatric palliative care. New York: Oxford University Press, 2003:314-331.bit.ly/17bI2BN
7. Steinhauser KE, Christakis NA, Clipp EC, McNeilly M, McIntyre L, Tulsky JA. Factors considered important at the end of life by patients, family, physicians, and other care providers. JAMA. 2000;284:2476-2482.http://jama.jamanetwork.com/article.aspx?articleid=193279