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Being told and telling others that the end is near

April 22, 2002

When physicians have to tell patients that their cancer has progressed beyond the point where treatment is possible, the situation is difficult both for patients and their families and for the doctors themselves. In her dissertation at Linköping University, Maria Freidrichsen elucidates the experiences of the various parties involved in such a message. The dissertation is the first ever in the field of palliative medicine (care at the end of life) in Sweden.

Maria Friedrichsen herself works at the Palliative Research Unit at Vrinnevi Hospital in Norrköping. In one section of her thesis she presents an account of interviews with 30 cancer patients connected with a program offering hospital-directed care in the home in Ã-stergötland County. Patients stressed the importance of having a physician with a balance of medical and psychological skills. This balance means that the physician should be able to be empathetic without feeling too much pity for the patient.

"It can be troublesome if the doctor is too emotional. A doctor who almost starts weeping cannot offer patients the support they need," explains Maria Friedrichsen. Having some kind of prior knowledge made it a bit easier to accept the knowledge. Some patients lacked this knowledge, either because they had not been willing to absorb information they had previously been given or because they had changed doctors several times and therefore had 'fallen through the cracks' information-wise. To these patients, the diagnosis came as a complete surprise and was therefore extra hard to accept.

Having the support of a relative was described by many patients as important. They also felt that the physician's choice of words played a major role. "Statements regarding statistical chances of survival, a limited time to live, or the expression 'there's nothing we can do' left patients feeling hopeless and abandoned," says Maria Friedrichsen. On the other hand, if the physician offered help, support, and palliative treatment and care, there were at least tiny points of light in the darkness.

The family members she interviewed saw themselves as having had a key sheltering and supportive role to play when the diagnosis was delivered. Some participated in silent emotional support in the background, whereas others were extremely active and pumped the physician for as much information as possible. There were also some who actively attempted to prevent the physician from delivering the diagnosis. Instead, they tried to steer the discussion onto other subjects, arguing that the patient would not be strong enough to cope with the gravity of the situation.

In the final section of the dissertation, Maria Friedrichsen interviewed 30 physicians with varying amounts of experience in these matters. Some of them said that they used a strategy based on medical evidence and arguments, while some tried to adapt and tailor their information to each individual patient. Some doctors prepared their patients well ahead of the presentation of the diagnosis in order to avoid shocking them. Some attempted to swathe their message in positive terms to make it easier for the patient to absorb. "There is no single, best-practice strategy; instead, the way the information is conveyed should be adapted to each patient. Some patients prefer to receive neutral medical information, while others think it is important for the physician to show sympathy," emphasizes Maria Friedrichsen on the basis of her patient interviews.

On the other hand, she maintains that is good to have prepared the patient for the diagnosis that might be coming, so it does not hit them like bolt of lightning out of the blue. She also feels that young physicians should first be given the opportunity to be present when a more experienced colleague conveys this grave information before they have to do so on their own.

Vetenskapsrådet (The Swedish Research Council)