My web site is devoted to medical and treatment information about this rare cancer. My blog is devoted to sharing what has been the more difficult part of the journey for me, the emotional and spiritual road I've traveled as a rare cancer survivor.

Thursday, April 2, 2009

End times #4

I'm reading the book "Jane Brody's Guide to the Great Beyond". The book is well written, and even includes some tasteful comics ("Grandpa's secret to longevity is life support"). It is a book we all need to read. We all need to think about living wills and our feelings about life support. We all need to consider what we want when our lives near their end. We need to do that for ourselves. We need to do that for the people we love.

As an ICU nurse I've taken care of 90 year old patients on ventilators who were maintained on critical care drugs and life support when there was no possibility they would recover a quality of life off of the machines. When this happened it was usually because no one wanted to not "do everything" for grandpa, or did not know what grandpa's wishes would have been as no one had ever talked to him about it prior to his becoming ill.

The worst memory I have in my 27 years of nursing is that of caring for a 26 year-old end-stage cancer patient who begged me to take her off her many life support devices (actually to not reconnect them when she removed them herself) and to let her die peacefully. In the end we had to restrain her hands to keep her from disconnecting herself from the ventilator she'd been on for a month, from the feeding tube, from the IVs. I was unable to legally comply with her wishes as she was on narcotic drugs for pain that interfered with her legal ability to make that decision. Her family was unwilling to let her go, though they knew she had no more treatment options and would eventually lose her battle. They held hope there might just be a last-minute miracle.

I to this day can see her face and the eyes that begged me to not intervene. I took care of her every day for weeks. I cried while driving home from work then, I felt I had failed her. I was glad the day I came to work to find her bed empty. She had finally gone home. She was no longer tethered to multiple machines. Her hands were no longer restrained. She was finally free.

Reuter's Discussions About End-of-Life Care Reduce Healthcare Costs in Last Week of Life stated that "Patients with advanced cancer who reported talking about their end-of-life wishes with their physicians had significantly lower healthcare costs in the last week of life. Researchers found that these conversations between patients and physicians led to fewer cases of aggressive care, which saved money and resulted in a far more peaceful death for patients. .

One of the things I loved about my months volunteering for hospice was being able to talk to patients about their end-of-life fears and concerns and hopes. There was something about talking about their impending death openly that took some of their (and my) fear of death away. Jane Bordy's states "...many psychotherapists believe it is important for people to discuss their anxieties and other emotions concerning death with friends and relatives. Such openness helps dispel the fear of dying". My experience with hospice truly made me understand that. Oftentimes friends and family are uncomfortable with the subject so avoid it, or don't want the dying person to "give up" hopes that they may after all survive or have a miraculous recovery.

What saddened me most about my hospice experience was that often the many services hospice offered to provide comfort both physically and spiritually to patients were never realized as many entered hospice with only days to live, when they could have had months of care, comfort and preparation provided to themselves and their families in final days had they entered hospice sooner.

Our denial of death is costly. In many ways.

2 comments:

Daria said...

Thank you for the enlightening post.

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