Although difficult conversations to have with our elderly loved ones, it is important to find out what measures our family members would want in the event they are incapable of making those decisions for themselves. When I worked in a nursing home, I found that these conversations unfold over time with family members as they come to know the medical team involved in their loved one’s care. I made it a point to initiate the discussion during the admission process by introducing the family to the options available – everything from do not resuscitate, to no hospitalizations. Over time, the family and I would discuss what the resident’s wishes were, or if not known, what they might have been, as well as what the chances for survival were for their particular illness.

The worst time to make these decisions is during a time of crisis – for example in the emergency room when a parent has suffered a stroke or heart attack. Case in point involved a resident in the nursing home, whom I will call Gladys, who had lost the ability to speak and was wheel-chair bound. Her stroke had been about 5 years earlier and when I came to know her, she was clearly depressed – despite being on an anti-depressant. I and other staff, would find her tugging at her g-tube, the tube inserted into her stomach through which she received all her nutrition, because her stroke had left her without the ability to swallow. Was she trying to tell us she wanted the tube removed? Did she understand that without the tube, she would die? If she was fully rational but incapable of making her wishes known, would it be ethical to allow someone who was depressed to make a decision to end her life?

Sometimes I would try to ask straight-forward yes or no questions about her wishes. But it was hard to know if she really understood what was being asked of her – sometimes she would nod in the affirmative that she wanted her g-tube removed and other times she would simply stare at me. I needed consistency in her responses but I wasn’t getting them. A psych evaluation didn’t shed much light on her ability either. Maybe after all these years, she was too despondent to care, or maybe because of her stroke, she had no cognitive awareness of her situation.

I heard that the decision to put in the g-tube was made on the doctor’s urging as the “right thing to do”. The family was clearly torn – their mother had not wanted any heroic measures – but from a medical perspective it’s easier and quicker to put in a g-tube than deal with a family’s emotional turmoil when working through end-of-life decisions. I don’t think anyone thought Gladys would live as many years as she did after her stroke and the staff, including me, felt it was a blessing when she finally died.

So do advance directives make a difference? Yes according to the New England Journal of Medicine, “Patients who had prepared advance directives received care that was strongly associated with their preferences.”

For a personal perspective, Pauline W. Chen, M.D. gives a moving account in the New York Times of how the burden to decide on treatment was lifted from her and her family by the existence of her father-in-law’s living will. I hope after reading it, you and your family can have a meaningful discussion about end-of-life care before a crisis occurs.

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