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Dying is not a medical event.

Ira Byock, M.D.


Honor Their Wishes
Dying People—Like All People—Need Respect and Support

By Cat Saunders

Some people think it's impossible to communicate with someone who's in a coma or has dementia. Some people believe that when dying people can no longer speak or write or open their eyes, or when they're "in another world," this means they can't communicate their needs.

I disagree.

In my experience, it's absolutely possible to communicate with people who are no longer able to do so in the usual ways. Of course, it helps to have training in this work, but an open heart and a willingness to "find a bridge" can go a long way toward making it happen, training or not.

If you go to a foreign country, do you expect the people there to speak your language? I doubt it. You probably know that the best way to communicate with people in another country is to use their native tongue.

It's the same with people who are dying. When you visit a loved one who is dying and no longer able to communicate in the usual ways, imagine that you've arrived in a foreign country. It's not helpful to expect the dying person to relate to you on your terms. Instead, it works better if you consider yourself a "visitor to a foreign land," and find a way to bridge to the dying person's world instead.

At the end of September 2004, the 92-year-old mother (Anita) of my dear friend, Leanne, died a gentle death with the help of hospice (real names used here with permission). Anita had gradually become increasingly debilitated over the years, having suffered a mastectomy, several strokes, blindness, and other physical challenges. At some point, she decided she was ready to die and did not wish further medical interventions. She also stipulated verbally and in writing that she did not want to be hospitalized again.

Anita had done everything right in the death-planning department, having prepared and regularly updated her will and her Advance Directive for Health Care, and having joined People's Memorial Association (PMA) to handle the disposition of her body in the simplest and most inexpensive way. Anita had also completed the necessary legal documents to name Leanne as her Durable Power of Attorney (DPOA) for finances and health care. In addition, she had notified her family, her doctor, and the nursing home (where she lived) of her request not to be put on life support or subjected to any extreme measures to extend her life.

Despite this thorough preparation, Anita's peaceful death was almost derailed by the fears of those around her. A week before Anita's death, Leanne called me. She was upset because she had "caved" in the face of a distraught nurse and a disrespectful doctor who had pressured Leanne into hospitalizing Anita despite her written directives.

At first, Leanne asked me to intervene spiritually to figure out what to do next, but I preferred to visit Anita in person instead. I wanted to ask Anita directly what she wanted, and I wanted to do it in a way Leanne could witness herself. Having done this work before with others, and most recently with my own father before his death, I felt that the direct approach would be best. Leanne agreed.

We arrived at Virginia Mason a little before ten that night. The nurse on duty recognized me and asked if I'd been there recently. It turned out she'd been on duty the night my father was hospitalized there with a broken neck a few months before (he died June 1st). That particular nurse had extensive hospice experience, which was welcome support for my work with Anita.

It took about two hours for me to help Anita communicate her wishes (in her case, by using the movement of her left leg to say "yes" to my carefully worded questions). Through this process, Leanne was able to see for certain that Anita wanted life support removed so she could die. With an immediate "yes" response from her left leg, Anita was also able to convey forgiveness when I asked if she'd be willing to forgive Leanne for hospitalizing her against her will.

When Leanne was satisfied that I'd covered all the bases with Anita, we asked the nurse to remove life support and begin palliative care to relieve Anita's pain and ease the dying process. It was sweet solace for Leanne to see every trace of anger disappear from Anita's face as soon as all the life support mechanisms were removed.

Before Leanne and I left at midnight, we arranged to have Anita transported back to her own bed at her nursing home. One week later, on September 27th, Leanne was present when her mother died peacefully that afternoon.


    This article was originally published by Evergreen Monthly (November 2004).

    RESOURCES

    To receive a do-it-yourself packet of documents for Durable Power of Attorney and an Advance Directive for Health Care (formerly known as a Living Will), please call Senior Services of Seattle-King County at (206) 448-5720.

    For information about inexpensive cremation, funerals, and other end-of-life arrangements, please contact People's Memorial Association at 1-800-765-0107 or visit www.peoples-memorial.org.

    For hospice care information or referrals, please visit www.hospicepatients.org or contact Bailey-Boushay House in Seattle at (206) 322-5300 or www.vmmc.org/bailey-boushay.

    To learn more about how to communicate with and care for people in comas or other nonverbal states of consciousness, please see Amy Mindell's book,
Coma: A Healing Journey (www.aamindell.net).

Additional support for end-of-life care can be found in Dr. Ira Byock's books,
Dying Well and The Four Things That Matter Most or by visiting www.dyingwell.org.



Cat Saunders, Ph.D., is a counselor and consultant, death doula, and nonsectarian minister in private practice in Seattle, Washington. She is the author of Dr. Cat's Helping Handbook (available at Amazon.com). Click here to contact Cat or learn more about her work by returning to the home page. To schedule in-person or telephone consultations, please email Cat or call her 24-hour confidential voice mail at (206) 329-0125.