Saying It As It Is
”You will die of your cancer. You have weeks, perhaps months left. It’s something you have to start planning for”, said the doctor. The 40-year-old woman in front of me wept. Over her rounded cheeks and thick wavy hair was nothing that betrayed the fact that she was dying. This meeting took place during my first clinical placement in the medical programme, within advanced home care. Her bodily fullness originated in groundbreaking doses of cortisone and the curls came from a wig. I – inexperienced and quiet – was overwhelmed by the doctor’s frank manner. Speaking in this way to a dying person, it is really right?
I remembered the meeting when reading a study in the scientific journal, New England Journal of Medicine. Researchers had studied 1,198 patients who had been diagnosed with incurable cancer of the lung or colon, and had chosen to be treated with chemotherapy. Specifically examined were the patients’ expectations of treatment. Chemotherapy in disseminated cancer of that kind is neither a sinecure I don’t think this word works here, but that is the translation.nor a cure. Rather, it is palliation, in crass terms: a few more weeks, maybe months. The study showed that 69 percent of patients with lung cancer and 81 percent of patients with colon cancer had unreasonable expectations, and thought the chemo would make them healthy. Education, function-level or degree of co-determination, in this context, do not matter. Ethnicity and type of cancer were significant, but that which made me flinch – and remembering my experiences as a student – was a third connection; namely, the patients who rated the relationship with the treating oncologist as ”very good” were more likely to have overconfidence in the treatment than those who thought the relationship was less good. So the patients who felt that they had a good relationship with their doctor had, to a higher extent, an inaccurate understanding of what the treatment was intended for. How does that work? The study’s authors ventured the following conclusion: doctors who give hopeful messages are perhaps perceived as better communicators.
People, even the dying, are equipped with an optimistic bias, a penchant for trust. ”Others may die of lung cancer, but I’m the exception that proves the rule”, she thinks, when starting chemotherapy. Did the attending doctor perhaps hum assent? The study puts its finger on a sore spot. Honest conversation between doctor and patient is not done simply and quickly. It is a delicate task of balancing hope against despair, of encouraging life even when death is quickly approaching. But that the same thing also applies to more mundane ailments is of less importance; to sit down in conversation with the patient and make clear what really matters is a delicate task. It takes time and requires a lot from all parties. Neither do all statements fall on good soil. As health care choices become more and the care more and more advanced, the need for candid conversation simply grows. At the same time, the spirit of the age and local politicians are going in almost opposite directions. Remuneration systems reward usually short visits. Upon dissatisfaction, physicians can be exchanged for another. Surveys want to ensure that patients are ‘satisfied’ with their visits, regardless of the health care content. In the U.S., it goes even further: hospitals within the health insurance system Medicare get, under the new compensation system – Value Based Purchasing – a part of their compensation based on how satisfied their patients are. In New York, some hospitals have gone even further, where doctors’ pay is linked to patient satisfaction. Is there reason to believe that patients would choose differently with other knowledge? There is, in any case, reason to believe that the understanding and experience of care affects the attitude to efforts at the end of life. This year, the American physician and assistant professor, Ken Murray, wrote an essay entitled ”How Doctors Die”. Murray writes about the orthopaedist Charlie, his friend and mentor, who suffered from pancreatic cancer.
Few types of tumour are equally as virulent, or have as dismal a prognosis. The cancer often initially shows only harmless symptoms, and makes itself known only when it is already spread beyond hope. When well rooted, less than one percent survives five years after diagnosis. Charlie, Murray explains, chose to forgo any potentially life-prolonging treatment, surgical as well as pharmaceutical; this despite the fact that he had access to the most skilled surgeons and the most elaborate treatment. Instead, he put his career on the shelf, left the hospital, never to return. He died in the company of the family a few months after diagnosis.
The essay deals, in a subtle and eloquent way, with the fact that health professionals themselves often wish to avoid some of the care to which their patients are exposed. Stories of anaesthesiologists who have tattooed ‘NO CPR’ (cardiopulmonary resuscitation) on their chests, I have both heard and read about.
Whether it’s a tall tale or not, we cannot say, but the point is clear: the CPR to which doctors expose others is not something you would necessarily want for yourself. A well-known study on a group of 1,000 physicians who graduated between the years 1946 and 1964 at the American Johns Hopkins University, showed that nine out of ten of them would rather die than in cardiac arrest than receive CPR. In the study, which is the part of the well-described cohort underlying the Johns Hopkins Precursors Study, said that there were as many doctors that would rather die than end up on a ventilator. Very few wanted to undergo dialysis; even fewer wanted to receive chemotherapy. More than seven out of ten even wanted to refrain from blood transfusion. Nine out of ten, however, desired all available pain relief.
How the same type of study would turn out among Swedish doctors, no one knows. But doctors, my colleagues, are generally neither particularly hardened nor indifferent. In healthy years, all fear death. But, despite the emotional register mostly being intact, there is reason to believe that doctors relate differently to such things than people in general. Perhaps it is that the experience of heroic interventions, surgery and intensive care, remedies optimistic bias – ”others may die from lung cancer, and it will probably also do me in”.
The most common desire is to pass away at home with family nearby and in peace. In reality, Swedes often die elsewhere. According to the Swedish Cause of Death Register from 2010, 38 percent died in hospital and 34 percent in special housing. Is this a good way of dying? Hopefully.
But in the so-called Palliative Register’s twelve indications for appropriate care at the end of life – including anxiety relief, validated pain assessment, human presence at the moment of death, and so on – hospitals rank worse than other institutions. Why? In a report in Läkartidningen from 2012, Maj Rom, senior doctor and project manager at the Swedish Association of Local Authorities and Regions, gives the following explanation: ”We are very focused on saving lives while working in a hospital. It is seen as a core mission, not to steer people out of life as a natural part of the life process. When the patient dies, it is seen quite often as a failure. ”
”When you die, where do you want to be then?” My supervisor wanted to leave the decision about what should be done, and what should be surrendered, to the one it actually affected. With her – still in my ears – harsh words about death, she wanted to give the patient the opportunity to determine the course of their own demise. To some extent, she wanted to give them the same chance as physicians gain through their professional lives – to make a timely assessment, to get to opt ??out of treatments that restrict the opportunity to be at home when the time comes. To think about what is really important, to prioritise needs. Whether the patient was ‘satisfied’ with the care, I do not know; neither do I know whether she was able to rate her relationship with her doctor as good or not. But I know one thing for sure: she got a greater choice than many other patients I’ve met throughout the years, precisely because the right questions were asked while time still existed. In advanced home care, there is time for talks with all the health care professions – important conversations, those that prove decisive for how the last days of life turn out. The doctor told me: ”Wherever you end up, you must, when necessary, dare to talk about death with your patients”. One of the most important pieces of advice I have ever received, I would think. For death is not always a failure.