Compassion pieces: how a death doula can fill in the gaps
Sheila Burke and her husband, Shane, had been married for 31 years when Shane started coughing up blood. Although usually reticent to seek medical attention, he asked Sheila to take him to the hospital. Things moved quickly; he was soon diagnosed with an aggressive and incurable form of lung cancer. He was given months to live.
As Sheila did everything in her power to ensure that Shane received the best possible care, and was able to enjoy his last months as much as possible, she encountered the ways that the conventional medical system let down patients and their loved ones as they navigate a terminal diagnosis. Although the doctors were doing their best to take care of Shane’s physical health, and to buy him as much time as possible, Sheila and Shane were repeatedly wounded by the absence of “bedside manner”: information conveyed without care to explain the concrete implications, bluntness without compassion. In the most devastating moments of their lives, they needed gentle accompaniment, but more often than not, they did not receive it.
Sheila and husband shane on one of their many adventures.
When Shane entered palliative care, Sheila felt like she was given honest answers for the first time. The palliative care nurses understood that those staring down their own death or the death of a loved one deserve the truth, delivered with sensitivity. This change in tone from the medics Sheila had dealt with in the hospital until this point came as an enormous relief. Sheila asked a nurse point-blank how long she thought Shane would live. The nurse responded, with refreshing and respectful truthfulness, that she thought he had three weeks. He died three weeks later, to the day.
Shane’s death, at home surrounded by his family with his favorite music playing in the background, energized Sheila to bring change to the way that death is approached in our culture. She saw how sacred the process of dying is, that those who are dying and the people close to them deserve the space to honor death in ways that are meaningful to them. After doing some research about how she could help to contribute to a more holistic view of death, she decided to become a death doula.
Death doulas, like birth doulas, are there to provide practical and emotional support. “You need someone in your corner”, says Sheila: someone to help you understand your rights and to deal with the practicalities of preparing for death, but also someone who can help you to map out what would ideally be involved as you prepare for the death of your loved one, and to achieve that if possible. A death doula can help to pick up the “compassion pieces” often dropped by the conventional medical system. They can help you to get the honest information you deserve, and to process difficult answers in a safe, empathetic space; they can honor and respect religious or spiritual practices you want to involve in the dying process; they can help you to keep love, hope, and even joy, present in the process of preparing for the end of life.
Anticipating death and grieving someone’s passing are inevitably hard and painful, but through her experience with Shane, Sheila learned that it can be an opportunity to accompany loved ones on their passage from life to death. A death doula allows the dying and those around them to decide what they can do to make this final journey one in which hope and love are present alongside loss and sorrow.
Sheila’s memoir is entitled Bullshit to Butterflies. You can listen to Sheila’s story in her own words in the podcast episode “Compassion pieces”: How death doulas fill in the gaps when a loved one is dying - interview with Sheila Burke
If you have received the support of a death doula or a a death doula yourself, we’d love to hear about other ways that doulas fill in the gaps in end of life care.
