Love and care until the very end.
Text: Angelika Jacobs
Most people who develop a chronic or degenerative disease are cared for intensively by a female partner or daughter. Medical ethicist Christopher Poppe interviewed family carers of individuals with amyotrophic lateral sclerosis to ﬁnd out more about their situation and needs.
Caring for a family member can push a person to their limits. One extreme scenario is the palliative care provided to individuals with amyotrophic lateral sclerosis (ALS). Every year, around 100 to 150 people in Switzerland are diagnosed with this devastating condition, which affects the nervous system and gradually results in total paralysis. A few years ago, the Ice Bucket Challenge raised awareness of the disease worldwide – celebrities and individuals poured buckets of ice-cold water over themselves, posted the videos online and donated as well as raised money to help fund research into potential treatments.
Focus on the patients
So far, however, the approved medication to alleviate ALS can only slow its progress and extend a patient’s life by a few months. A cure has not yet been found. “At the moment, once a person is diagnosed, the sole focus is to maintain their quality of life for as long as possible,” explains Christopher Poppe, a doctoral student of biomedical ethics. This also raises ethical questions, for example relating to artiﬁcial feeding and respiration.
Christopher Poppe is writing his dissertation on palliative care for ALS patients under the supervision of senior researcher PD Dr. Tenzin Wangmo from the Institute for Biomedical Ethics at the University of Basel. His research focuses on the people who provide the lion’s share of this care: family members, usually women. “Existing support options focus – justiﬁably – on the patients. Their relatives are not at the center of care.”
Always one step behind
One reason may be that ALS usually progresses very rapidly. “Many caregiving relatives say that they always seem to be one step behind,” explains Poppe. “By the time they receive the walker they’ve ordered, their relative might already be in need of a wheelchair. Or they can’t convert their house quickly enough to keep pace with the disease.” One reason may be that ALS usually progresses very rapidly. “Many caregiving relatives say that they always seem to be one step behind,” explains Poppe. “By the time they receive the walker they’ve ordered, their relative might already be in need of a wheelchair. Or they can’t convert their house quickly enough to keep pace with the disease.” He has spoken to 36 individuals and specialists in German-speaking Switzerland who are currently providing care or have done so in the past.
While he has not yet analyzed the interviews in detail, he was deeply moved by the labors of love performed by caregivers – usually wives and daughters. “This is an inconceivably intensive time with a very close, caring relationship.”
Poppe was surprised to ﬁnd that, until the death of their family members, carers regarded their own psychological well-being as secondary and rarely accessed the support services on offer. “They probably have very little time to think about their own burdens and feelings,” he says. This suggestion is backed up by the strong grief reactions many carers experience after the death of their family members. This is the ﬁrst time they have paid attention to their own feel-ings, opening the ﬂ oodgates to the sadness they have previously pushed aside.
Carers tend to focus on practical issues such as organizing technical aids or how exactly to administer pain relief. The study participants particularly welcomed the development of mobile palliative care teams who can help relatives to provide care in the home and give valuable guidance, especially in the ﬁ nal phase of the disease.
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