Friday, April 9, 2010

A Cat on the Bed

There's a new book out about a special somewhat clairvoyant cat named Oscar. Dr. David Dosa works caring for Alzheimer's patients in a Boston nursing home. The uncanny cat, Oscar, is noticed by the staff to have an unfailing accuracy in being able to identify a patient in their last day of life. Although Oscar is amazing in his talents, no one really knows how he knows when death is imminent.

Dr. Dosa's story is about more than Oscar. He delves deeply into the family/patient/staff interactions with pre-terminal and terminal Alzheimer's patients and families. It was very hard for many families to accept that their loved one was dying and that hospice care was the best option at the end. There are sad poignant stories of families wanting to "do everything" including intensive care, ventilators, and CPR.

This brings to mind a patient of mine I'll call Frank. He had very severe chronic lung disease and was on oxygen. Every time I brought up end-of-life care he'd get mad at me, "Listen doctor, I'll decide that when the time comes. I don't want to think about it. And if I'm unconscious then my kids can decide what needs to be done."

"Frank, have you talked about your wishes with your children?"

"No, but they love me and will know what to do."

A few months later, Frank severely gasping called 911 when he couldn't breathe. The medics found him blue with shallow breathing, so they put a tube down his throat into his trachea. He struggled so much they had to heavily drug him. At the hospital he was placed under my care in the ICU. He had pneumonia which was very slow to clear. After about four weeks on a ventilator, it was clear that this was going to be a much longer trial for Frank. A tracheotomy was done along with attempts at nutrition and muscle strengthening. Attempts to wean him off the ventilator were unsuccessful.

During all this, the family was struggling. What would Frank really want? Was he in pain? Communication was difficult because he was so agitated when awake. Finally he was sent to a chronic ventilator facility where they specialized in cases like Frank's - trying all the means to keep him going.

Indeed, Frank spent two more months there before succumbing to a stroke. His end of life wishes were unknown. It was very hard for the family to limit care. So by making no decision, Frank had really decided on the default choice - do everything.

Comment: Now there's some hope for the benefit of end-of-life discussions in the research field. In a 2008 article in the Journal of the American Medical Association the authors report the following: "The researchers found that such discussions were not associated with higher rates of major depressive disorder or more worry, but these patients received significantly fewer aggressive medical interventions near death: lower rates of ventilation (1.6 percent vs. 11.0 percent), resuscitation (0.8 percent vs. 6.7 percent), and ICU admission (4.1 percent vs. 12.4 percent). Patients who had end-of-life discussions had earlier hospice enrollment (65.6 percent vs. 44.5 percent), and longer hospice stays were associated with better patient quality of life, while more aggressive medical care was associated with worse patient quality of life.

Patients who reported engaging in these conversations were significantly more likely to accept that their illness was terminal, prefer medical treatment focused on relieving pain and discomfort over life-extending therapies, and have complete a do-not-resuscitate order.

Caregivers of patients who received any aggressive care were at higher risk for developing a major depressive disorder, experiencing regret and feeling unprepared for the patient’s death, compared with caregivers of patients who did not receive aggressive care. They also had worse quality of life outcomes, including overall quality of life, self-reported health and increased role limitations. Better patient quality of life was associated with better caregiver quality of life at follow-up.

'Our results suggest that end-of-life discussions may have cascading benefits for patients and their caregivers. Despite physicians’ concerns that patients may experience psychological harm due to end-of-life discussions, we found no evidence that they were significantly associated with increased emotional distress or psychiatric disorders. Instead, the worst outcomes were seen in patients who did not report having these conversations." the authors write.

"Given the adverse outcomes associated with not having end-of-life discussions, there appears to be a need to increase the frequency of these conversations. By acknowledging that death is near, patients, caregivers, and physicians can focus on clarifying patients’ priorities and improving pain and symptom management.'"
(JAMA. 2008;300[14]:1665-1673.

Although the research, as above, is showing that end-of-live discussions can benefit both patients and caregivers, the medical profession has a long way to go. We are taught to diagnose and treat. Now prevention of illness, life styles, etc. are being rightly promoted to enhance quality and quantity of life.

However, death, the "D word", is still not effectively dealt with in our medical system. Death is universal yet achingly difficult emotionally to bring up and discuss. The time though to have these discussions with our loved ones begin is when we're healthy and in our right minds.

When Oscar eventually approaches our bed, we need to be ready. Can we say, "I've lived a full life, told everyone that I love them, apologized to those I needed to, and come to peace with my maker?"

Let's hope we can smile when Oscar hops on our bed and snuggles up close.

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