At the tail end of 2014 I drove all over Auckland in what was to become a research project that touched both my life and that of my summer research student Conor.
We interviewed 20 palliative care (end-of-life) patients most of whom passed away before the research findings were published this month in the New Zealand Medical Journal. Despite our patients’ difficult situation, they were willing to be interviewed by two strange men armed with clipboards and recorders from the University of Auckland medical school.
For a brief hour or so, participants welcomed us into their homes (and their hearts), gave us tea and biscuits, and shared their family photo albums. We met their partners, their children, and their pets. And we chatted for a time while recording every word for later transcription.
We talked about many things including their experiences of compassion (and lack of); the “joys” of chemotherapy, colostomies, hair loss and explosive diarrhoea that covered walls; of kind doctors and nurses; and of apathetic clinicians. Though Conor and I were aware that these were very vulnerable people, staring into death’s cold face, we also knew that they were rich in experience and held many insights into healthcare and life. One participant had to pause every few raspy, whispered words to catch her breath. She insisted that I continue the interview although it was obviously causing her difficulties.
Unsurprisingly, most of them had a lot to say about our doctors and nurses. Contrary to my expectations, however, all were profusely thankful for the services they received from clinicians, hospitals, clinics, and, especially, hospices.
There were many constructive comments and a few shockers (for example a staff member who ignored a patient having breathing difficulties and another who continued jabbing a patient looking for a vein despite the patient protesting in pain). For the most part, however, their reports were glowing. Maybe the patients who agreed to be interviewed were more positive than the average, but I nonetheless appreciated their compliments on the New Zealand health system.
We asked them questions regarding their experience of compassion, lack of compassion, happiness and advice to training clinicians. The happiness research paper is yet to be written.
Looking across the interviews, the comments of these dying people regarding compassion suggested four themes:, connection, presence and warmth respect and caring.
Connection was seen as a feeling of partnership between the treatment team and the patient. Connection is when the patient felt understood. A frequent response of patients was the importance of touch as a way to connect. One participant recounted a biopsy she was having and when a nurse saw her in unbearable pain, the nurse quietly squeezed her hand. The participant was in tears when recalling this incident.
Presence and warmth of clinicians was another recurrent compassion theme. This was described as a positive presence, friendliness, a smile, or a feeling that the clinician was happy to see them. This captures the non-verbal aspects of compassion. Our posture, actions, and eyes tell our patients if we are really there for them or not.
Respect was the third compassion theme, when patients feel that they are treated as intelligent human beings, valued as a person, and not judged. A sub-theme of respect was professionalism which includes promptness in appointments and being present in the consultation. Many of the participants expressed their understanding that doctors and nurses are over stretched and can be late, but an apology would be appreciated.
Caring was a dominant theme which included feeling being attended to sensitively, being supported, and their suffering acknowledged and/or addressed. One example that stood out was a surgeon who went down on his knees on the surgical floor in his gumboots to massage a patient’s cramps in her calves. There was also a young nurse who overheard someone else’s patient request a headgear because the patient’s hair had fallen out and it was winter. Despite the cold, the nurse went to her car in the parking lot to get her own knitted cap.
One common piece of advice by the patients to health professionals is for us to remember that they can be very vulnerable at the end of their lives; they need guidance, and they want to feel comfortable and be relaxed while they are dying.
A former student of mine, Ben, now training as a doctor in the United Kingdom, watched Star Wars with his palliative care patient. It was the patient’s final request before he died. Together with a nurse, oxygen tank, wheel chair, pain relief and all the associated gear, the patient watched Luke and Leia battle the Dark Side for the final time.
Three years on, I still think about our participants, of how they shared their lives, medical war stories, sorrows, tears, laughter, and hopes with us. They told us how a simple touch, warm presence and a bit of time can make a huge difference, probably more than the thousands of dollars’ worth of treatment and tests when one is sick and suffering.
Compassion is free, requires very little effort from us but will be remembered by our patients until the end.
We are indebted to the participants, their families and hospices that participated in this research project that was funded by the University of Auckland’s Faculty of Medical and Health Sciences.
Dr Tony Fernando is a senior medical lecturer at the University of Auckland School of Medicine’s Department of Psychological Medicine.
Citation: Fernando AT, Rea C, Malpas P. Compassion from a palliative care perspective. New Zealand Medical Journal. 2018; 131 p. 25-32.