Doulas for End of Life
Taught by Henry Joji Fersko-Weiss, LCSW at Valley Hospital Hospice
PLANNING MY OWN DEATH
I was sitting in a white antiseptic classroom at Valley Hospital Hospice Offices with seven other members of Heart Circle Sangha and eight other people who had volunteered for this training to be with the dying in the final hours of their life. We were being asked to imagine our own deaths and how we would like it to be at the end of our own lives. Who did we want to be there? Did we want quiet, natural talking, children, or music? Would we like someone to read us poetry or something spiritual or something personally meaningful? Where did we want to be? How did we want our families to honor this period of transition?
As I contemplated my death, I immediately realized I did not want to be in my bedroom which is upstairs and away from the main life of the house. I wanted to be downstairs in my study facing the backyard where I could look out on the sky, trees and grass, with fresh air coming from an open window. I wanted to hear quiet chanting of the Heart Sutra although no one in my family knows it nor would they be comfortable chanting. I would have to depend on the sangha for that. I wanted all my family there although since they live far away, I realized that was unlikely.
The process brought back sad-sweet memories of my mother’s death a year ago. I wondered if she would have liked music. We never asked her. When Henry mentioned that skin becomes so sensitive and delicate, it can crack open on its own, I thought of the new sheets I had bought for her in her final weeks when she changed to a hospital bed at home. Months later my grandson complained they were too “scratchy”, and my heart sank thinking of mom on scratchy sheets as she died.
I remembered my sister and I sleeping on the floor by her bed the last night and waking up all night long to hear her breathing and falling asleep again knowing she was still with us. She died at 9:40 am the next morning.
PREPARATION AND MEMORIES OF MOM
I think this program is incredibly important. So little attention is paid to the actual end of life process that we are not prepared for it when a loved one dies or when we ourselves have to face our own end of life. We are not accustomed to being dependent or to our parents becoming dependent on us. In addition to feeling fear, family and patient may experience anger or shame. Having a trained non-judging volunteer doula available can bring solace to the family and patient.
Henry talked about the medications used at end of life, morphine, lorazapan (an anti-anxiety medication) and others. There were questions about whether we would ever be administering medications but were reassured it would be the family’s responsibility and only as a last resort would the volunteers administer meds and only with the hospice nurse on the phone directing us.
It reminded me of how scarce the hospice nurse seemed at the end of my mother’s life although she always called us back promptly and was so very supportive. I remembered how frightening the envelope of medication seemed when mom first went on hospice care and how glad I was we didn’t need to know about it yet. It was stashed in the back of the frig where we didn’t even have to see it. And yet in almost no time, we (my sister and I and our wonderful home healthcare aide) were learning how to draw the morphine and the lorazapan into the syringe and administer it to her by placing it into her mouth along her cheek. It erased her pain and helped her to relax. It was like a gift from the gods that helped her find ease.
Once I gave her an extra dose of morpine when I was supposed to give her lorazapan. I was horrified and afraid I’d hastened her death. The nurse was wonderfully reassuring that it wouldn’t cause her harm at this point and that it would only reduce her discomfort. The nurse explained it was a judgement call regarding when it was appropriate to increase her pain medication or to give it more often. The nurse assured me she was already ready to reduce the intervals between doses. She was a very kind nurse.
Helping a patient find peace in these final days or hours may be challenging. It is natural to be afraid or angry. Staring boldly into the unknown is hard no matter what your faith.
Henry has developed a lovely guided meditations around the patient’s favorite places and fondest memories. He’s developed a way of interviewing patients to solicit the personal information needed to create a personal guided meditation that invites them to relax into a place of inner peace and calm and to accept the transition that they have begun. I found these meditations very moving.
Some years ago I developed a guided meditation for a friend who was dying and I found it helped him in moments of crisis and fear. He would periodically ask his wife to invite me over to guide him in this way. I would see his face relax and peace enter his mind and heart. He was a Christian and I was a Buddhist, but like Henry’s meditations, this was non-sectarian and very comforting. I subsequently used it with others who were dying including my mother.