Each handicap is like a hurdle in a steeplechase, and when you ride up to it, if you throw your heart over, the horse will go along, too. ~~Lawrence Bixby

Thursday, July 21, 2011

On Death and Dying

Yesterday I was privileged to take part in a support group for women with ovarian cancer. The discussion was about end of life – decisions, fears, thoughts, emotions. It’s not an easy conversation topic, but these 12 women bravely shared their innermost feelings and supported each other through this discussion.

It made me aware of how far we’ve come in our culture regarding death and dying, thanks to people like Elizabeth Kubler-Ross, Stephen Levine and my friend Jan Selliken, who led the discussion yesterday. Jan worked for years as a midwife and OB nurse. When she was introduced to hospice work, she found a new calling and became aware of the similarities between the birth and death processes. (Jan's book, The True Work of Dying, is available from Amazon.)

When I was growing up, death was rarely discussed. Dying people were sequestered in nursing homes and hospitals, the dead were whisked away as soon as the event occurred, funerals were macabre affairs that had little to do with the deceased person. We owe a debt of gratitude to hospice and palliative care organizations for working to shift attitudes about death and dying.

Being almost ten years out as a survivor, dying is not a subject that’s quite as in my face as it is for the women in this support group (the issues of long-term survival are for another blog post), but one topic seemed to be common for all of us – the fear that our wishes about our dying and death wouldn’t be honored. Those things included:
  • Having decisions made for us by those who are certain of what we want
  • Having people around us during the dying process who we want to be there
  • Honoring our wishes about what is done with our bodies after death and about the kinds of memorials or celebrations we want to have happen
Jan shared some great resources, including an example of Personal Care Directives. Similar to Advance Directives (which everyone should have on file), this specifies things like support people in the last weeks and days of life, people NOT desired at time of dying, pets to be nearby, comfort measures (that special quilt, music, readings, etc.), rituals before death. These are the kinds of things we rarely think about until the time comes, and the dying person may not be able to communicate these needs then.

Jan also made us aware of the Physician Orders for Life-Sustaining Treatment, or POLST, which is like Advance Directives on steroids. It doesn’t replace Advance Directives, but complements them by being more specific about the kind of life sustaining care you do or do not want administered.

My role in this amazing group yesterday after the discussion was to facilitate the creation of SoulCollage cards. I provided materials, gave them a quick demo of how to put a card together and in an hour, they had each created a remarkable piece of art. As our closing, each woman talked about the process and the product, and as you can imagine, the results were profound. Thank you all for sharing your hearts and spirits!
On another note: I'm still waiting for the final word from SSDI. According to my online file, a final decision has been made and I’ll be hearing via mail soon. Maybe tomorrow? Fingers crossed!


Jill said...

How wonderful of you to join this support group and share an activity with them.

Your post is an important one. Thanks for writing it!

Wendy said...

This kind of thing is meeting such an important need in our communities...thanks for sharing it, Terri.

Linda Koons said...

You've educated me today, Terri. I'm fairly sure that no one in our office is bringing the POLST program to the attention of our clients, and Pennsylvania has an endorsed program. You can bet I'm going to spread the word starting in about 2 hours! Thank you, thank you, thank you. This is big in a very good way.

Tiffin said...

One of the best comments I have heard about dying was made in response to my comment to a friend about how supportive and wonderful she had been to her father when he was dying of cancer. I was struck by how it was entirely about him as far as she was concerned and that there wasn't a single selfish thing expressed or done by her. "Well," she said, "It was his death, not mine." Her role as his advocate was to ensure his comfort and dignity.

I keep procrastinating or forgetting to do anything about a living will, specifying directives, etc. Your post reminds me that I need to take care of this. Important stuff here, Ter.