Hospice can help alleviate distress, suffering

Hospice can help alleviate distress, suffering

delmarva

By: ALANE K. CAPEN, COLUMNIST

March 4, 2015

The Maryland legislature will be considering a bill, the Richard E. Israel and Roger “Pip” Moyer Death with Dignity Act. What it really talks about is physician-assisted suicide.

The issue is emotionally charged and polarizing. It also misses an important point: We are not giving people the care and honest information they need when they face a life-limiting condition.

I do not know how I will feel when my turn comes and I am realistically looking at the end of my own life. Having lost both of my parents to cancer, I do know that I would not have been ready to let go of them one day sooner than the disease naturally took them away from me.

What is striking to me as a hospice professional is that “death with dignity” legislation is not provoking other primary questions.

The real questions should be: How are we caring for people at the end stages of disease? Why do people feel they would need an option to end their life? How do we assure everyone who is eligible for the comprehensive services of hospice takes advantage of it early enough to alleviate distress and suffering?

I see this as a call-out for better, more widely utilized end-of-life care.

Across Maryland, we have the hospice and palliative care resources to provide seriously ill people with a comfort and security that can replace suffering and desperation. With timely hospice referrals, we can afford patients and their families the opportunity to make tender memories.

Much individual growth and love can happen in the last days of life — when symptoms are controlled and support is present. There is dignity in that. But fewer than half of eligible patients receive hospice care, and a third of those who do are referred in their final days of life — too late to enjoy many of the benefits of comfort, emotional counseling, volunteer friendship and spiritual care.

We need to change our cultural mindset somehow. Hospice is not “brink of death” or “when there is no hope” care. Patients redefine hope for themselves when they have honest information, realistic expectations and the support of a team of professionals who are experts in relieving distress.

“Affirming life” is the first of Coastal Hospice’s values. Our care and treatment neither hastens nor postpones the natural course of dying. That being said, “respect” is another strongly held value.

It is not our job to condemn or condone a legal decision that someone makes regarding how they want the end of life to be. It is our job to provide physical, emotional and spiritual support to that individual, to not abandon them even if we could not participate in a course they had chosen.

Although some may feel control of the timing of the end of life through assisted suicide provides its own measure of dignity. I feel sadness for those who will not experience the many benefits that hospice care can bring, and the closure for the families left behind.

There can be moments full of love, poignancy and learning for patients and their families — and value in those moments through the very end of life. Better access to care that allows a natural death — with pain relief, comfort and support — is the option desperately needed for a better end.

Alane K. Capen, a registered nurse, is president of Coastal Hospice.

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