A diagnosis of cancer changes everything. It portends coming days and months of challenges. Most obvious perhaps are those related to treatment: What therapy, drug or approach is most likely to succeed, to eradicate the cancer and return that person to health?
But the physicality of cancer is just one aspect of a larger picture. Every facet of a person’s well-being must be addressed. It can be a task made more daunting if the prognosis is not good.
Scott A. Irwin, M.D., Ph.D. is a colleague. He is director of psychiatry and psychosocial services and patient and family support services at UC San Diego Moores Cancer Center and director of palliative care psychiatry for the UC San Diego Health System. He has spent his career working to improve psychiatric and psychosocial assessments and treatments for patients with progressive, potentially life-limiting illnesses, as well as support and care for their families.
I asked him to talk about the idea of “whole person care.”
Dr. Irwin: Some questions I often ask the people I care for are — What is most important to you? What brings you joy and makes you feel fulfilled? — many people respond with answers of family, friends, good health, work, contributing to society and spirituality. There are many, many other answers.
Next I ask: What if you were told you only had a few months to live, how might that change your answer? What now would be most important to you? What would bring you joy and make you feel fulfilled?
Some responses might remain the same, but often they would be different. Patients frequently reply that what they care about most is family, friends, mending fences, leaving a legacy, controlling symptoms, being able to care for themselves, engaging in pleasurable activities for as long as possible and maintaining mental clarity.
You’ll note most of these answers are not “medical” in nature; nor are there any effective “high-tech” interventions for them. These are desires that make us human. They define us as persons. They are unique to each of us.
They are the important things.
Whole person care is a concept that has been around for a while. It best describes care that is mindful of the things that matter most to us, as individuals with unique points of view and needs. At its essence, whole person care addresses every important facet of our lives — as individuals, as members of families, as parts of social circles and beyond. Comprehensive whole person care must seek to check-in with, bolster, and, when necessary, address distress in all domains of our lives that are important to us.
Many issues qualify. Among them: How will the illness will be managed and with what interventions? How will physical symptoms be dealt with, from pain to nausea to fatigue? In what ways will emotions like joy, sadness, depression, fear or anxiety emerge? How can resilience be reinforced?
There may be social consequences to address as well, such as a patient’s standing in the community, interactions with friends and accounting for the role work has played in the person’s life.
Let’s not forget the practical issues, too, such as making sure bills are paid, wills and advanced directives are completed and care is provided for dependents.
Whole patient care includes making sure the last days and hours of life are carefully considered and planned. What will happen? Where will it happen? Who will be present? How will suffering be addressed?
Grief and bereavement needs to be noted and honored — for the person with the illness who has lost an anticipated future and for the family and friends for whom that future has now changed.
And, of course, there is a need to understand how spirituality — religious or not — colors and interacts with the patient’s experience.
Whole person care involves attending to each of these dimensions, and possibly others, based upon the person’s needs and desires. When we are on our life’s trajectory, most of us seek predictability and a planned future. Potentially life-limiting illnesses like cancer knock us off of that path, injecting volatility, instability and its attendant anxiety.
It is — or should be — the job of care providers to return us to a predictable path, as much as possible. It may not be the path that we had hoped for or planned, but it should be a path that minimizes distress, including that of unpredictability. I often suggest to those I care for to hope for the best and prepare for the worst.
No single person can do this alone. It takes a team: family, friends and social support networks working with nurses, doctors and others who care for those with progressive, potentially life-limiting illnesses and their families.
When needed, this can include additional support from experts in psychiatric and psychosocial support, as well as palliative care. If you or a loved one confronts a potentially life-limiting illness, you should — and must — demand that every aspect of your life be recognized, honored and, if needed, assisted by those providing care and support.
These are the important things.
—Scott M. Lippman, M.D., is Director of UC San Diego Moores Cancer Center. His column on medical advances from the front lines of cancer research and care appears in the La Jolla Light the fourth Thursday of each month. You can reach Dr. Lippman at firstname.lastname@example.org.