By Claudia Burlá, MD, PhD
IAHPC Board Member
Care. This small and seemingly simple word has gained tremendous importance over the past few decades. History shows that, in the past, life span was short. Improvements in health care and general living conditions that occurred throughout the 20th century have also improved life span. We see the outcome today: the world’s population has aged. Ageing is accompanied by an array of physiological changes, and the risk for older people to develop chronic diseases and care dependency increase. Furthermore, older individuals typically present not one, but myriad comorbid conditions that are incurable. This makes it impossible to establish a treatment protocol. Palliative care focuses on the individual and the distressing symptoms they present, which makes it the right therapeutic approach for chronic conditions that are irreversible, incurable, and progressive.
With ageing, adult children often become “the parents” of their older father or mother, because the caregiving roles are now reversed. For young children, who are healthy and thriving, one has nannies or sitters. For older people with chronic diseases and often with comorbid conditions, one has caregivers.
All over the world, women are the main informal caregivers of a family member. Perhaps societal and cultural demands of a world still dominated by men account for that; it is more likely for a woman to give up her job or reduce her hours than a man.
In the past, when few people reached older ages, the need for care was relatively small. In addition, higher fertility rates made families large enough so that there were a number of women to share the provision of care. With the decline in mortality and fertility, the contingent of older individuals has increased while the number of younger family members has declined; another difference in the modern scenario is that many more women are in the paid labor market.
Chronic diseases are those that are persistent, often incurable, and require ongoing care. Because these conditions are progressive, the need for care expands over time. There is a learning curve for informal caregivers, linked to emerging impairments caused by the progression of disease. There may come a time when caregiving could include bathing, changing diapers, feeding (while averting bronchoaspiration), moving the person around the house (while minimizing the risk of falls or accidents)—all of which require learning proper technique. Some caregivers will face situations that require more technical care, such as managing infusion pumps or percutaneous endoscopic gastrostomy, or wound dressing.
Of concern, now, is the care of those who survived severe COVID-19 and are discharged from the hospital. Instead of learning to cope, over time, with a degenerative disease, the family is caught by surprise with the task of suddenly providing care for someone who was healthy just days or weeks ago. This degenerative condition allows no learning curve. Survivors have to deal with complex outcomes, including post-traumatic stress disorder, depression, and anxiety, as well as pulmonary dysfunction, reduced exercise tolerance, and reduced health-related quality of life. COVID-19 survivors are also vulnerable to further health deterioration, which may lead to new hospital admission within 90 days, most commonly for recurrent infection or exacerbation of chronic health conditions. The sequelae left by COVID-19 have a deep impact on the life of the person, their loved ones, and especially their caregivers.
When I was a medical student, oftentimes I heard the attending physician of a patient with advanced disease tell the family, “I am sorry, there is nothing else to do.” This has always bothered me. Perhaps inspired by Joe Darion’s lyrics to “The Impossible Dream,” and after decades of medical practice, I came to realize something: if, at first, the practice of palliative care was like dreaming the impossible dream and fighting the unbeatable foe, despite the fact that there is a limit to treatment, no star is unreachable. Care is always there, until the very end.