More technology increases demands on family custodians 

New technology is radically increasing opportunities to care for and monitor sick people in their own homes. At the same time, there is a risk that relatives will have greater demands placed on them to attend to their sick family and deal with the new technology. Ethics researcher Elin Palm warns of increased stress and social isolation.
A time bomb. This is how the approaching explosion of aging in Europe is characterised. Today, four people are active in a career for every pensioner. By 2050, that ratio is predicted to shorten to two. An ageing population requiring more care is expected.

Politicians and planners are pinning their hopes on new technology that will make it easier to care for and monitor the elderly and the sick in their own homes. Sensors built into clocks and clothes; keep tabs on blood pressure, pulse, and body temperature. Sensors can also monitor things such as when the refrigerator door was last opened. Cameras can monitor the patient’s movements in the house, and robots can render it easier to contact the care provider.

The technology already exists and is being tested in so called ‘living labs’. Elin Palm, a researcher in applied ethics, has studied this development. She sees an increased risk for social isolation.

“Using electronic supervision in the home, and with conversations over Skype, health care staff do not need to travel to patients as often. We’re taking away the personal meetings that are still the foundation of good health care.

She also sees increased vulnerability for family custodians. Informal health care, often provided by family members, is a widespread phenomenon even today. It is estimated that one in every four European residents provide health care for a family member. The new supervision technology is expected to increase this share even further, as it makes it possible to care for even more people at home.

But the role of family members in health care is often unclear, poorly defined, and limited, as is their responsibility. Palm writes in an article in the Journal of Health Care Analysis under the ambiguous title “Who Cares?”

“The role of informal health care is rarely mentioned in discussions on future health care” she says. “But it brings legal, social, and ethical questions that need to be discussed to the fore.”

Stress and social isolation run the risk even now of affecting family custodians, as shown in the few studies that have been conducted. They’re often unprepared for the task of health care, where the extent and duration of care can be difficult to judge. They could be forced to give up their leisure interests, social activities, and free time. Their efforts are seen as a voluntary commitment, despite the fact that on many occasions the family custodians may not have a choice, morally speaking. The risk of burnout is great, which in turn can lead to family health care degenerating into abuse, and leading to the family custodian requiring care.

When sophisticated supervision technology is installed in the patient’s home, family members are not always consulted, nor are they offered any training. Family members could feel unsure about dealing with the technology and whether it is functioning as intended. The issue of responsibility has yet to be established concerning improper diagnoses due to failure to deal with the technology.

Palm asks herself to what extent can family members be expected to care for elderly and sick relatives, and discusses how other cultures and thinkers view this. In China, for example, adult children have a legal obligation to take care of their aging parents, yet the issue in Western society has not been clearly answered. The needs of aging parents must be balanced against the needs of their grown children, Palm suggests, and family custodians need both training and their own medical check-ups. Their rights and responsibilities need to be clarified, and their responsibilities defined. The new technology is still in its infancy, despite there being so much talk about it, Palm says.

“Like the saying goes, lots of talk - little action, at least so far."

It’s even true for Japan, which is often mentioned as a leader in this field. A ‘robot seal’, for example; a therapeutic stuffed animal produced in Japan that isn’t widely used there, but which has been purchased by Denmark for Danish elder care,” Palm says. She has also developed a model for technology assessment. It consists of a battery of questions that narrows down how the technology in question affects fundamental values like self-determination, integrity, and social relations.

Anika Agebjörn 2012