Q: When my husband’s parents were admitted to a nursing home, they were asked to sign advanced care directives to let their doctors and nurses know how much care they expected if they got sick.
My husband did not want his parents to sign the directives. He was worried that the staff would use them as excuses for not properly looking after them. I do not know much about advanced care directives. What do you think?
A: To understand the need for advanced care directives, you must appreciate how miraculous modern medical technology has become.
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Doctors and nurses are able to keep many people’s bodies alive even though those people are in deep comas and would otherwise have died. In fact, they can sustain life for considerable periods of time and through difficult illnesses.
When patients are in comasor are otherwise not able to communicate, medical staff do not know what or how much care their patients want. They do not know if people want their lives artificially supported or if they would prefer to have the machines disconnected and let nature take its course.
Doctors and nurses sometimes ask patients’ families to help them figure out what is best for their patients, but this has not always worked.
Studies show that unless people have some kind of proxy in which someone in the family is specifically charged with looking after the well being of their parents and have been instructed by their parents on how to do so, only 50 percent of family members will actually know what their parents want.
It does not matter how close people are to their families – families often as not guess wrong about the most pressing issues challenging their parents.
This can lead to tremendous stress within families, with brothers and sisters disagreeing about what their parents want and resorting to unfortunate accusations during those moments when everyone would most likely need support from each other.
Advanced care directives are specific instructions, prepared in advance, that are intended to direct peoples’ medical care if they are not able to do so themselves.
They give people opportunitiesto have their wishes respected even though they may be in a coma or are otherwise not able to participate in decisions about their medical care.
Advanced care directives are usually prepared when people are of sound mind, in their most rational moments, and able to think clearly about their optionsfor the future. Many advanced care directives include do-not-resuscitate orders, which is likely the part that is troubling your husband.
Do-not-resuscitate orders tell doctors and nurses when people would like their artificial support systems discontinued, despite knowing that without artificial support they are most likely to die.
Studies done on advanced care directives show that families are often not as ready to accept death and dying as part of the treatment plans as are the patients.
As a result, families are more reluctant to support orders that acknowledge the realities of terminal illnesses.
While the patients may be comfortable with do-not-resuscitate orders, their families are not. Such is likely true for your husband.
He does not need to worry about the quality of care the doctors and nurses are giving his parents.
Regardless of whether their advanced care directives are asking for continued medical care or more limited support from their doctors and nurses, the medical staff are bound by their professional codes of ethics to provide the best possible level of care to his parents.
Medical staff members who are not providing good quality care should be reported to their professional organizations.
Jacklin Andrews is a family counsellor from Saskatchewan who has taught social work at two universities. Mail correspondence in care of Western Producer, Box 2500, Saskatoon, Sask., S7K 2C4 or e-mail jandrews@producer.com.
