Arlene Radasky | 25-Year Hospice Volunteer and Certified Death Doula/Death Midwife
Disclaimer: All views expressed in this blog are the author’s own and do not represent the view of NHPCO or affiliated organizations.
Virginia grew up on a small farm and was fiercely independent. She worked extremely hard, juggling two jobs to raise her sons after her beloved young husband passed from a heart attack. The youngest of her two sons had an intellectual disability and required much of Virginia’s spare time.
As the boys grew into men, her youngest son, wanting independence for himself, chose to live in a group home. Her eldest son became a dentist and moved across the country.
As Virginia approached 68, she was diagnosed with myositis after several, injury-causing falls. Following two years of treatment, she could not live independently anymore. Additionally, her eldest son had a stroke and was living in a brain injury facility.
Virginia was on Medicaid and was moved to a nursing facility that had a bed available. She eventually declined to the point that she and her doctor decided hospice was the right next step for her wishes.
She chose a local hospice, was evaluated and accepted, and her care team began caring for her. The hospice death doula volunteer on the team, Mary, made her first visit with Virginia to get to know her. Mary visited once a week for one hour, during which time Virginia became very comfortable with her.
At her visits, Mary helped Virginia fine tune her advance directives, talked about vigils, and planned what Virginia would like to have at hers. Mary also discussed the different options for burials or cremations after Virginia’s death and when Virginia decided on one, Mary made sure it was noted in her advance directives. The hospice team was notified and given copies of the edited advance directives, and Mary made sure a POLST was also completed.
In their many conversations, Mary learned details that Virginia had not felt comfortable talking to the doctor and nurses about. Mary made note of these concerns, such as a suspected bladder infection, in her weekly reports and team meetings. If needed, the subjects were discussed between Mary’s medical team, counselors, and Virginia in more detail.
Virginia continued living in the facility for eight months while she was under hospice care. Her falling risk was high during the last six months of her stay there and she was not let out of bed without supervision. These restrictions cause some toilet accidents that were mortifying to Virginia. Swallowing became more difficult, and the facility tried to compensate by changing her diet, making sure everything was cut into bite-sized pieces and eventually, blending some meals.
At the six month point of Virginia’s hospice care, she began asking about medical aid in dying (MAID). Mary made note of her questions and told Virginia’s team about their conversations. Virginia’s hospice counselor talked to her and together, they made the decision to start the process for Virginia so she would be able to use the option if she wanted to. Virginia asked Mary to transport her and attend the required appointments.
Virginia received the prescription and was told at that time by the facility she was in that she could not be a resident there when she decided to use the option. Virginia became anxious and despondent.
Mary reported this to the hospice team and asked if the hospice facility allowed the option. It did not, and neither did another facility in town. The only option left was to find a bed in a private home.
Mary asked Virginia about her friends with homes who lived nearby. There were very few, but Virginia and Mary contacted one who, after talking to Virginia on the phone, asked to meet with her. Mary picked up her friend, Theresa, and took her to meet with Virginia. They talked for an hour about the past, Virginia’s disease, and her decision. Mary then took Theresa home. One week later, she called Virginia and said she had an extra room where she could come stay for a while.
Mary told the hospice team a bed had been found. Together, Mary and a hospice nurse went to visit Theresa and look at the room. It was found appropriate, and a hospital bed was ordered for Virginia to be able to be in.
Mary was with Virginia during her transport to Theresa’s home and was able to make her comfortable, reporting back to the hospice team that Virginia was laughing with Theresa when she left.
Mary continued her weekly visits with Virginia, who had been on a liquid diet for two weeks when she said she was done and wanted to take the medicine. Mary discussed this decision with Theresa and with her hospice team, and the date Virginia had requested was assigned.
On the day Virginia chose, Mary arrived early so Virginia’s requested vigil space could be set up. A small fountain bubbled in the corner of the room. Virginia was changed into her requested night gown and made comfortable. Large scarves were draped around the windows to create a softer atmosphere, and over Virginia as she lay in the bed. Virginia’s chosen music was playing on Mary’s phone lying next to Virginia. Theresa came in to say goodbye but said she could not stay in the room while Virginia was dying. Mary said she would come tell her when it was over.
The nurse came and helped Virginia mix the medication with her choice of fruit juice. Virginia drank it when it was time. Mary sat next to Virginia, holding her hand at Virginia’s request the entire time.
Virginia continued breathing for longer than expected and the nurse left to attend to other patients while Mary stayed with Virginia during her vigil. After Virginia’s last breath, Mary called the hospice, reported that she needed a nurse to come to declare death, and went to tell Theresa that Virginia had died.
Mary sat with Theresa until Virginia’s body was removed. Mary made one more visit with Theresa a week later to talk about her grief, and to let her know about grief resources in the community.
Mary, the volunteer Death Doula, added many hours of compassionate discussion and attending to personal details for Virginia while she was a hospice patient.