The April 2019 Mayo Clinic Proceedings published a special article entitled, "Finding Hope and Healing When Cure is Not Possible." Brad Stuart (affiliated with Coalition to Transform Advanced Care) and co-authors reported on an approach for patients and families with pediatric brain tumors.
In this group of patients, they emphasized how clinicians can help guide patients and families between focused hope (which centers on cure) to intrinsic hope, which they describe as offering a more realistic and resilient emotional foundation as the child’s death approaches and letting go becomes essential. The authors go on to emphasize the importance of cherishing the present and creating new memories that outlast the disease, while avoiding the construct that no more can be done and emphasizing there is a great deal to do in providing physical, emotional and spiritual comfort. They detailed how physicians and others can be unconditionally present with patients and families without immersing themselves in anguish.
In the accompanying editorial, written by Paul Mueller, an internist within the Mayo Clinic Health System, he takes us back to Sir William Osler (1849-1919) and his approach to patient care when options for cure were more limited. Mueller emphasizes that pain control is essential when hope is limited and that acknowledgement that the physician will not abandon the patient is key in providing intrinsic hope. Further, Mueller describes Osler’s admonishment that physicians should not “go about among patients with a long face”.
Having practiced chronic and cancer pain medicine for some years in my own career both Stuart’s and Mueller’s advice rings true to me. I often shared with my cancer pain patients a triad of promises. It went like this, “First, I will not abandon you, second, I will tell you when I don’t know the answer, and third, I will never lie to you.” I often shared with the fellows training in pain medicine that those three statements were the equivalent of 20 mg of morphine sulfate three times a day. Of course, that was a bit of hyperbole. What these physicians in training also learned was sometimes just being present and holding a patient or family member’s hand was more important than words.
With Stuart and Mueller’s manuscripts in my file, I now know that what I was doing was providing intrinsic hope. It is not avoiding the fear of death, rather, it is accepting death and building trust and memories.