Sander de Hosson, pulmonary specialist at WZA (Wilhelmina Hospital Assen), The Netherlands
My initial encounter with palliative care took place during my electives. On the ward was a 60-year-old woman with an extensive cutaneous and pulmonary metastatic melanoma as well as a brain metastasis. The experimental therapy that she had received had already been stopped some time ago because of unacceptable side effects. Due to a seriously progressive neurological presentation, the performance score was very mediocre. When the ward doctor scrolled through images of her brain and displayed the numerous large and small brain metastases the supervisor’s conclusion was clear. ‘Lost case.’ Later, when I entered the patient’s room together with the ward doctor, I saw the patient for myself. Atactic, dysarthric, paretic. A much better word is dramatic. Dying.
As we talked to her we noticed, more than anything else, an overriding sense of fear. Fear of death and, above all, fear of the process of dying. A fear that was also partially elusive. I later see the word ‘Oxazepam’ on the prescription written out in the consultation room.
In his excellent treatise on this subject, Atul Gawande, a surgeon from Boston, formulated five questions which ought to be asked of any patient with a life-threatening, incurable affliction:
- What do you know about your illness and how acute is it?
- What are your fears and insecurities about the future?
- What are your goals and priorities in life?
- What are you prepared, or not prepared, to give up or endure?
- What does a good day in your life look like?
“I was intrigued by the contrast with the other way the patient had been approached.”
Asking these questions, but above all listening to the answers, is an essential pointer for somatic, psychosocial and existential care, which can and perhaps must be provided. Drug-based intervention usually plays a subordinate role in this.
Happily, in the case of this patient, the decision was taken to consult a spiritual carer in connection with the clear existence of existential issues. Her visit to this patient was a valuable experience for me. I was intrigued by the contrast with the other way the patient had been approached. The spiritual carer did not stand up but sat down instead. She used the available time primarily to listen, rather than subjecting the patient to a barrage of questions. Quite frequently no one said anything. Such a visit ought to be an obligatory part of the training of every house officer and junior doctor.
I recently read a scientific research paper that stated that one in three patients who are in hospital at any one time in the United Kingdom die within a year. In our daily hospital practice we often work on the welfare of patients who will no longer be around in a year’s time. Often it is not possible to work out who these patients are, but our clinical intuition can sometimes give us an idea. ‘Advance care planning’ is not a hollow shell.
“Clearly, it is essential that any care provider who treats patients with incurable oncological diseases and organ failure has an awareness and competency in palliative care.”
Now that oncological science is producing impressive results along previously inaccessible routes, the duration of the palliative phase will also increase to match the corresponding increase in somatic and existential problems. The development of palliative care in the Netherlands has gone beyond the pioneering phase. Clearly, it is essential that any care provider who treats patients with incurable oncological diseases and organ failure has an awareness and competency in palliative care.
After a series of inspiring talks with the spiritual carer I noticed that, during the days before her death, the fear had disappeared from the patient’s eyes. She was no longer a ‘lost case’. There was a great deal still to gain.
- Sander de Hosson writes regularly for Agora (Policy Support Centre that promotes a palliative approach into healthcare and welfare services). Read more of his posts here.