Palliative Care: My Death Belongs To Me

19. February 2013
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Terminal cancer: Often patients in their final weeks are deprived of the chance to settle matters that are still of importance; only in exceptional situations communication is not exactly easy.

Toward the very end of the lives of cancer patients, many doctors reach for aggressive therapies. Something which may be medically speaking lege artis does not always match the innate desire of terminally ill people. Better decision-making tools are needed.

Successful dialogue – clear opinion

As part of a prospective cohort study U.S. oncologists surveyed the medical histories of 1,231 patients with lung or colon cancer in the final stages. Around half of all participants shortly before death received chemotherapies, intensive care or acute care in a hospital. Patients who had discussions with their doctor on the topic of the last weeks of their lives received far less aggressive treatments than the comparison group. They were however often cared for in hospices. Palliative chemotherapies shortly before death are generally not to be rejected, the authors emphasise. The treatment, however, must be discussed with patients and compared with what they imagine it to be. Many cancer patients want more time, and it is precisely here that cytostatics find an appropriate use. “But most of those who know of their death actually don’t want such provisions”, says Jennifer W. Mack of the Dana-Farber Cancer Institute Boston, giving some food for thought. In order to be better involved in decisions with their patients, physicians ought to offer discussions early and not wait until the patient’s health has deteriorated rapidly.

Palliative medicine or cure?

Something which may be medically obvious is from the perspective of lay people not always clear: Many patients are lulled into the false sense of security that their treatment could defeat the cancer. Concepts such as palliative medicine are often alien to them. This is the conclusion oncologists under Jane C. Weeks at the Dana-Farber Cancer Institute have come to. For the study leading to this conclusion, researchers took 1,193 patients into their study. In all cases metastatic lung and colon cancer had been diagnosed four months earlier. In addition to medical data, interviews supplemented the overall clinical picture. Weeks’ conclusion: about 69 percent of lung cancer patients and 81 percent of all patients with colorectal cancer were convinced that oncologist could by using palliative approaches bring about healing.

Surprisingly, the authors frequently found misconceptions among cancer patients who reported very good communication with their doctor. “If patients do not know whether their therapy promises a realistic perspective in healing, they cannot strike any informed decisions regarding their further treatment. These misunderstandings prevent people from planning their lives as desired”, says Weeks offering something to think about.

“Communication problem not to be concealed”

Yet what is there to do? In one editorial, Dan L. Longo, deputy editor of the New England Journal of Medicine, and Thomas J. Smith, John Hopkins School of Medicine, went in search of solutions. Many people are optimistic, and the terminally ill are no exception. “If patients have unrealistic expectations of a cure, for example in palliative care, we have a serious communication problem that we must not conceal”, Longo and Smith believe. The topic draws further questions: have those affected not realised or not understood that their palliative treatment promises no cure? Or did they simply not want to believe the bad news?

It is true according to U.S. data that two out of three physicians as part of the first discussion go into the topic of terminal illness after the diagnostic data is presented. Only a third however mention the prognosis – either during the first consultation or at a later date. This has consequences: approximately two months before the end of their lives, for example, 50 percent of all patients with end-stage lung cancer were missing important information about hospice or palliative care options for outpatients.

Prejudices taken very seriously

Jennifer W. Mack went on the trail of numerous prejudices which hold her colleagues back from having candid discussions with cancer patients. Her analysis:

  • The truth depresses patients. False – honest information allows better planning in the last months. In the “Coping with Cancer” study oncologists found no evidence of more depression or worries or fears after candid discussions.
  • It is difficult to make an accurate forecast. Correct from a scientific perspective; according to research, evaluations were subject to some major errors. That is however no excuse to leave patients in the dark. Rough periods can be indicated in most cases anyway.
  • Palliative medicine or care in a hospice reduces life expectancy. False – many pieces of research show just the opposite. Thomas J. Smith has now evaluated seven randomised controlled trials. His conclusion: if the palliative therapy is combined with standard therapies, patients benefit even in terms of their life expectancy from the concept. What’s more in-patient intensive care was more rarely required. He could not find evidence of adverse effects in the literature.
  • Discussions about the imminent end of a life provide physicians with major challenges. It is true – it is especially bad to deliver bad news to patients with whom a relationship has been maintained over years. Ultimately help is only obtained from training and supervision that deal with the situation professionally.

Ask – tell – ask

A way out of the dilemma: Longo and Smith suggest that oncologists should provide more fully personalised information. Here the proven technique which applies is to ask, to tell, and then to ask again (“ask, tell, ask”). Already during the first discussion prognosis should be covered, and by the third date at the latest information on hospice or palliative care options should be provided, the authors advise. Aside from the prognosis, the values placed by them on religion or philosophical beliefs are also considered an important issue.

Decision support to take home

Often patients are so shocked following the devastating diagnosis that they simply close down. Canadian oncologists therefore developed a decision-making aid to take home. They tested their tool as part of a randomised trial of 207 people with end-stage cancer. Patients who received a patient information pack, an audio guide as well as several questionnaires were better informed in the first follow-up meeting regarding their prognosis, possible therapies and palliative approaches and important decisions were met more easily. They had in no way more anxiety than the comparison group without information. The tools mentioned can at best support, but not replace, difficult discussions.

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Medicine, Oncology

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1 comment:

Excellent report! Thank you!

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