By Carl Grey, MD
Associate Professor and Director of Palliative Care at Wake Forest Baptist Health
Palliative Care is a young field, recognized as an official discipline of medicine by the American Board of Medical Specialties in 2006. Many may not know that some of the most significant Palliative Care research is rooted in strong collaboration with Oncologists treating lung cancer. Dr. Jennifer Temel’s study in 2010 (1) found that early Palliative Care along with standard oncologic care for non-small cell lung cancer improves quality of life, decreases depression and anxiety, and helped patients live a few months longer even while receiving less chemotherapy, fewer hospitalizations, and more hospice in the last month of life.
A new study by Dr. Donald Sullivan retrospectively analyzed Palliative Care involvement in those with lung cancer in the Veterans Health Administration (2). It found increased survival for those seeing Palliative Care between days 31 and 365 after their diagnosis. Patients seen before day 31 had a lower survival because needing an ASAP consult after diagnosis means advanced disease with a very poor prognosis. In those patients, Palliative Care is being asked to help with comfort during the dying process, which is vitally important and also contributes to the stigma that Palliative Care is End-Of-Life. Dr. Temel and other leaders in the field argued in an editorial that we should not be focused on longevity of life; the focus should be living as well as possible for as long as possible, all the while supporting the loved ones of those with these illnesses. However, it does not hurt to help people live longer; a good quality of life may add to quantity of life. This may help decrease the stigma that Palliative Care is synonymous with End-Of-Life.
So how does Palliative Care help people with lung cancer live better, and even longer? First, by working closely with oncologists, caring for the same patients side by side. Second is likely symptom control, which is not a surprise. If I help a patient with pain, insomnia, shortness of breath, cough, appetite, and depression, there will be more energy to live well, and possibly for a longer period of time. Better symptom control leads to fewer Emergency Department visits, fewer readmissions, and less caregiver stress.
The next way that we help with a better quality of life hinges on high-quality conversation, beginning with exploring prognostic awareness, which is defined as the patient’s capacity to integrate the likely disease trajectory and prognosis. Patients with a deeper awareness can have more meaningful conversations about their values, and in turn match treatment decisions to those values. This can be assessed regularly with the following questions:
Laura Carstensen essentially showed in her research that understanding one’s prognosis affects perspective. Changing perspective can alter a patient’s goals, and make values more apparent. As my mother said once, “If I knew how much time I have on earth, it may change the way I live my life.” Often when we explore values, patients have difficulty putting them into words because they never have before, especially in a doctor’s office. Bringing them to fruition leads to value-laden medical decision making and Advance Care Planning.
Coping mechanisms are invaluable skills to teach patients and families. Cognitively, distraction is a very useful coping skill, as long as it is not used all the time. Allowing emotional flow is important; creating a safe space for discussing worries and sadness is essential. Sometimes patients need help celebrating good news, as they may be afraid it could be short-lived. Existentially, encouraging spiritual support is wanted by patients from their health care providers, but because we are not sure how to approach spirituality, it is often a missed opportunity. Simply asking about the importance of spirituality in one’s life, how it is practiced, and encouraging one to do so makes a positive impact.
Dr. Juliet Jacobsen at Massachusetts General has done important work on coping and teaches about a concept called the Dual Framework. It expands on previous work by Dr. David Weisman, who taught that it is normal for patients to swing between realistic and unrealistic hopes. He said it is impossible to always live with the awareness of one’s mortality; it is normal to almost forget one is seriously ill. During these swings, it is also natural for the patient to integrate different things at different times from different clinicians, and tell different clinicians different things at different times. We then think the patient is in denial, or wonder what our colleagues have been saying.
The Dual Framework involves maintaining optimism by hoping for the best, while acknowledging dying and preparing for the worst. When we discuss what living well is, one can begin to recognize the difference between living and simply existing without participating in life. Let’s say your patient is becoming weak from advanced illness and wants to go on a big family vacation in 10 months. I may ask what he wants to accomplish during that trip, say that I have always loved his optimism, and I worry the trip in 10 months may not happen. Can we accomplish the same trip in 2 months? Is he is worried about 10 months from now? This recognizes the possibility of dying, while exploring important values and emotions. When one can appreciate living and dying, the patient’s awareness allows him to think through options while feeling emotions which can enable important values. This may help a patient and family decide to focus on comfort at home instead of trying another treatment unlikely to help, and possibly make things worse.
Some may worry that acknowledging death will destroy hope. However, there are many kinds of hope other than just hoping for a cure. One may hope for more good days than bad, or as good of a life as possible until the end. Another can hope to pass along wisdom, check items off the bucket list, and plan a legacy to pass on memories to the rest of the family. I am very confident in saying that I am not strong enough to take away hope from anyone.
In summary, Palliative Care collaborates with Oncologists to help patients live well, and possibly longer with symptom control, coping, and prognostic awareness which leads to high-quality Advance Care Planning and prudent treatments at the end of life. As stated in the recent study by Dr. Sullivan, it should be viewed as a complementary rather than competing approach to disease-modifying therapy for patients with advanced cancer.
I want to thank Mass General Hospital’s Palliative Care Program for the excellent teaching I have received from them over the past 2 years. They are making huge advancements in the basic tenets of our field. If you have any questions or comments, feel free to contact me at firstname.lastname@example.org