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Life-threatening diseases

Facing imminent death

Munich, 11/18/2013

- Foto: Tyler-Olson / Fotolia
Foto: Tyler-Olson / Fotolia

People who are suffering from life-threatening, incurable illnesses contemplate suicide and assisted dying more often than their physicians suspect. These patients, and their families, deserve more psychosocial support, says medical ethicist Ralf Jox of LMU.

Amyotrophic Lateral Sclerosis (ALS) is an incurable condition, and is inevitably fatal. Average survival time following diagnosis is three years, and those years will be marked by continuous physical decline. ALS is a neurodegenerative disease that is characterized by progressive loss of motor neurons, the nerve cells that control the skeletal musculature. The loss of innervation leads to wasting of the muscles, which not only results in paralysis, but also inexorably robs one of the ability to chew and to swallow, to speak and, ultimately, to breathe. Earlier studies have shown that patients caught in this inescapable trap often consider suicide and, in jurisdictions in which such measures are legally permitted in these situations, many choose to hasten their deaths with the aid of doctors and relatives.

In this light, one may wonder what fraction of ALS patients in countries such as Germany and Switzerland, in which the legal position on the issue of assisted suicide is less clear-cut, contemplate assisted suicide. What precise factors elicit a strong wish to end one’s life prematurely? And, most importantly, how can one help patients and their families to cope with the enormous psychological pressure that inevitably attends such existential situations? Can an appropriately palliative care management, which may relieve patients in many aspects of their suffering, also lessen the desire to hasten death? Ralf Jox of the Institute for Ethics, History and Theory of Medicine at LMU Munich, in collaboration with Swiss colleagues, has now published the results of a study that sheds new light on this question. The investigation was carried out among ALS patients, but Jox believes that the results are applicable to other terminal conditions, such as advanced chronic obstructive lung disease or incurable forms of cancer.

A major taboo

Some 42% of the patients followed in the prospective study stated that they had considered taking their own lives. The main motives they mentioned were fear of future incapacity and pain, loneliness, and the perception of being a burden on their families. Notably, however, they had never spoken about these feelings with their doctors. “In the relationship between doctor and patient the wish to hasten death is a major taboo,” says Jox. Indeed, none of the ALS patients who participated in the study had ever expressed a wish to hasten death in a consultation with a physician. Many of them, however, indicated that they would have welcomed such a discussion. Jox therefore recommends: “Physicians should be willing to take the initiative and bring up the subject of suicidal thoughts and wishes to hasten death themselves, so that patients, caregivers and family members are better equipped to cope with the issue.” Only if the topic is dealt with openly can one attempt to probe the patients’ motives and anxieties. Is the patient perhaps troubled by some other unspoken worries or suffering from clinical depression?

The study also found that the families of patients often talked about the possibility of suicide and hastened death. “That is a slow and painful process for the family caregivers. Naturally, they do not want to lose a person who is close to them. On the other hand, they cannot entirely refuse to acknowledge a patient’s wish to decide autonomously how his life should end,” says Jox. The survey by Jox and his colleagues also reveals just how distressing life becomes for relatives of anyone suffering from an incurable illness. In the interviews, the families rated their quality of life as being on the same low level as that of the patients.

More support and counseling needed

“As life-threatening diseases progress, many very challenging decisions must be taken,” Jox points out. Among the most difficult are the choice of the most appropriate treatment option at different stages of the disease, deciding whether or not one should make use of experimental treatments or methods from alternative medicine, and determining which family member should be entrusted with the responsibility for making such decisions in the event that the patient is no longer capable of doing so.

“Patients suffering from progressive, lethal diseases, and their families, need more support and better psychosocial counseling,” says Jox. In the US and Australia, so-called “advanced care planning” programs have been developed, which ensure that patients with serious chronic illnesses, and their families, receive regular visits and advice from specially trained community nurses, social workers and doctors. “That is a great help,” says Jox. “And these programs have shown that patients are then better able to live their last months as they choose.” In Germany, projects in Advanced Care Planning have not yet progressed beyond the pilot phase. An assessment of the need for Pediatric Advanced Care Planning is currently underway in the Children’s Hospital at LMU.

Living with the knowledge

“There will always be people who, when they find themselves in such a situation, will consider hastening death as a possible way out,” says Jox. In taking this view, he contradicts the widespread notion that future developments in palliative medicine, and the provision of effective palliative care for all, will be sufficient to suppress any desire to hasten death among terminally ill patients. In the ALS study, Jox followed patients for over a year, and he emphasizes that these were all patients “who received the best available palliative care”. For patients perhaps the most devastating moment occurs when they receive the diagnosis. Over the course of the next several months, many of them learn to live with their disease, and feel better. Towards the end, as their physical condition inexorably deteriorates, their quality of life declines again. Loss of the ability to swallow, and the concomitant need for insertion of a feeding tube, is often perceived as a significant decline.

And yet, there are patients who manage not to lose their joy in life, even during the later stages of their illness. “It depends very strongly on the kind of personality one has,” says Jox. “Many people exhibit a great deal of resilience in the face of crushing blows.” There are published case studies of patients with locked-in syndrome, who are completely paralyzed following a stroke or as a result of ALS, but who retain all their cognitive faculties. “And with the help of computers, some of these patients described their quality of life as excellent,” says Jox.

The new ALS study also shows that individuals who have strong religious beliefs are better able to come to terms with a life-threatening disease. “A firm attachment to a religious faith can be a source of great strength when one is confronted with an incurable illness,” says Jox.

In the context of the controversies surrounding the issue of assisted suicide, persons with dementia present a very particular problem. “We know from studies in other countries that some patients with dementias express the wish to end their lives prematurely, and choose physician-assisted suicide where this is possible,” says Jox. “The crucial difference compared to other incurable diseases is that the patient must decide early on, simply because, as the condition progresses, there comes a point at which one can no longer decide for oneself.” And, of course, predicting one’s future situation is problematic even at the best of times. Thus, there have been cases where patients had signed an advance directive requesting that assisted suicide be considered as an option, but appeared quite untroubled at later stages of the disease. “The incidence of dementia will double over the next 30 years,” Jox points out. “This prospect presents an enormous challenge to our society.”

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