First let’s talk about Lloyd.
Lloyd had lung cancer, and when his oncologist informed him that there was nothing more she could do for him, Lloyd engaged the services of a death doula in order to help him during his final months. He liked the idea of having a skilled and caring companion to help him to make the emotional adjustment to his new reality – that his life would be ending within months.
He was able to share his fears and anxieties, even his anger and frustration that his life would soon be ending. He explored the moments in his life of which he was most proud and shared his deepest regrets and even some unfinished business in a few of his relationships. He spent time talking, crying, and at times just sitting in silence with someone who was able to take all of this in without judgement, and to hold his emotions with compassion.
As he became weaker, his doula was able to explain how his journey toward his death would look so that he could be prepared for what was happening to him before it happened. This was helpful to him as well as to his family, who were also able to spend time with the doula and share their own pain and anxieties. The doula helped his loved ones to know how to best help him, to be with him, and to talk to him about the things that they had previously struggled with saying. The doula eased the difficult communications between them and seemed to help them open up to each other around Lloyd’s illness and impending death.
Lloyd and his doula also worked together on very special letters he wanted to leave each of his loved ones, giving them a written artifact of the legacy of love that he cultivated in their lives. A few of these letters also contained some regrets and apologies that he wanted to make, but never had the words for before his illness. These letters became a priceless gift to his family members who cherished his messages of love.
The doula helped Lloyd to think about and plan the kind of death he really wanted to have, at home, with key family members and friends, with peaceful music and story telling, and even laughter at times. The doula also helped his loved ones to create a vigil plan, so that in his final days there was always someone there with him. After his death, the doula helped his family to find ways to cope with their grief, and helped them create a simple but meaningful ritual that they could practice each year on his death anniversary. The doula also ensured Lloyd’s advanced directives and healthcare proxies were in place to ensure his wishes were respected.
Without hospice care, though, Lloyd didn’t have a plan for ensuring his physical and medical needs were met during his journey, or a plan to ensure his pain was controlled so that he was able to experience the comfort and peace he so wanted during this time. He and his loved ones often wished they had a hospital bed so that he could recline comfortably and even be easily moved to his sunroom where he enjoyed watching birds. He and his family missed having a medical team trained in end-of-life care available 24/7 that they could contact with any questions or concerns. They often felt a bit lost in the medical community because he was done with cancer treatment, but still had significant needs for pain and anxiety management and comfort measures. Instead of having a centralized medical provider that would come to his home, Lloyd had to arrange transport to and attend these various medical appointments.
Now let’s talk about Linda.
When Linda found out that her cancer was in the final stages and that she had a few months to live, she requested her doctor refer her to hospice care so that her pain could be managed and she could die at home with her husband nearby. The hospice team provided an end-of-life specialist physician who was able to keep her pain levels under control and ensure her other medical needs were met. Even though she had given up further attempts at life saving treatment, she still needed care for a few other conditions and was able to get that through hospice as well.
The hospice nurses visited her once or twice a week to ensure her comfort and pain needs were being met, and to provide any assistive equipment she needed, including a bedside commode, and a hospital bed that allowed her to position herself comfortably. They were able to provide her and her family members with important information about her condition, and about how her illness would progress, and how it would likely look when she was actively dying, which helped them to feel more prepared.
Hospice also provided a social worker who was able to facilitate her hospice care and handle the insurance issues, and to provide some support to her and her family. A clergy member was also available to Linda through the hospice, and after her death the hospice provided a grief support group to her loved ones that helped them during that next difficult year. Shortly after her death in the early morning hours, hospice staff were able to come and declare her death, so that calling 911 was not necessary.
Without hospice, Linda would likely have died in the hospital. She might have had several trips to the ER during her journey as well due to pain and other symptoms that might have easily been managed at home under hospice care. She likely would also have had numerous doctor’s appointments to go to for her medications and for other issues that arose as a result of her condition. Her family might have been stretched very thin to ensure she was able to attend these appointments, or to get her medications refilled and organized for her.
Both of these people are fictitious, but while I made them up, their stories are based in reality. There is a third ending, though. In both of these scenarios three things are evident. One, there are some places where hospice and doula care overlap – great, better that than not enough care! Two, both hospice and doula services are invested in providing excellent end-of-life care and comfort for people who are facing terminal illness and death. Three, the best scenario would be to have both!
In a perfect world, hospice care could operate without the constraints imposed by insurance regulations and allow doctors and nurses to spend as much time with their patients as they needed or wanted. In a perfect world doulas could magically ease dying patients pain and anxiety, and provide their medical needs.
It isn’t a perfect world, in case anyone hasn’t caught on to that yet, but there is a very simple solution to this conundrum, and that is allowing both hospice and doula care to work together. When we work in unison, we can truly meet the needs of the dying person and their loved ones. Doulas are also trained to coordinate between themselves, hospice staff, and caregivers to ensure there are no gaps in care and to ensure all needs that can be met, are.
