When treatment ends: The Role of an End-of-Life Doula
After months or even years of surgery, radiation, multiple chemotherapy, immunotherapy, study drugs, CT scans, MRIs, PET scans, biopsies, endless blood work your Doctor looks at you and with visible discomfort, the words you have dreaded:
“There is nothing more we can do.“
The previous treatments have slowed the cancer’s progression, but now the options have run out. The tumours have spread. The news can feel overwhelming, even when it is not entirely unexpected.
The room fills with silence. That last bit of hope seems to evaporate. You knew this day might come, but hearing the words spoken aloud is different. Your heart sinks, and you face the reality you have been reluctantly expecting. The other shoe has dropped.
For so long, your life has revolved around treatments, scan results, lab values, appointments and test reports. You have traveled to this clinic so often that you know the best parking places, the names of the care team and perhaps even stories about their families. You even know the name of the woman working at Tim Hortons on the lower level.
These people have become an extended family of sorts. They have witnessed you at your worst and supported you through countless challenges; Although you knew this stage could eventually arrive, hearing it confirmed can leave you feeling abandoned.
You did not fail, the treatment failed you.
Your Doctor offers to refer you to Palliative Care. “Palliative Care is a specialized medical care for people living with a serious illness. This type of care is focused on providing relief from the symptoms and stress of the illness. The goal is to improve quality of life for both the patient and the family. It is based on the needs of the patient, not on the patient’s prognosis. It is appropriate at any age and at any stage in a serious illness, and it can be provided along with curative treatment.” (Get Palliative Care).
Palliative care has existed as a medical specialty since the 1970s. It provides holistic patient-centered support tailored to individual needs. Services may be offered at home, in hospital or in other care settings. A multidisciplinary team may include physicians, nurse practitioners or registered nurses, counsellors, personal support workers, physiotherapists, occupational therapists, dieticians, spiritual care workers and doulas. In Ontario, many palliative care services are covered under the Ontario Health Insurance Plan (OHIP). While palliative care addresses physical symptoms and medical needs, many individuals also seek emotional, practical and spiritual support. This is where an End-of-Life Doula is a valuable role.
As you become connected with a palliative care team, you begin searching for an End-of-Life Doula.
Gabby Jimenez, RN, author and End-of-Life Doula, describes a doula as:
“A companion, a guide, a choreographer, a mentor, a co-pilot, an usher, a driver, and a reliable, dependable friend who walks alongside you in life, at the end of life, and on your grief journey.”
A doula advocates, navigates and educates. They help you understand what to expect, reducing fear and uncertainty while encouraging meaningful conversations with family members. You search for someone who feels like the right fit.
When you meet your doula, she doesn’t ask “How are you?” She asks “How are you coping”?
You quickly learn that a doula sees you as a person, not as a diagnosis, an illness or an organ system. She wants to know how you wish to be treated, what matters most to you, and what your goals of care are. She can help you create an advance care plan and ensure your wishes are understood and respected. Most importantly, she wants to know who you are. What brings you joy? What are your hopes? What are your fears? With a doula, these conversations can happen without judgment.
She explains that death is a natural part of life, much like birth. Rather than focusing solely on dying, she helps you focus on living. Together you explore options and identify what a good day looks like for you. Perhaps it’s sitting outside in the sunshine enjoying an ice cream cone. Maybe it’s taking a drive to the lake to watch the waves. Whatever brings meaning and comfort to your days becomes a priority.A doula brings a wealth of resources and connections that can be tailored to your unique needs.
As time passes, you begin to appreciate that you still have life left to live.
Your doula builds a relationship with both you and your family. She calls, visits and helps navigate the plans and preparations you have chosen. She supports loved ones by explaining what to expect and helping them understand the changes that occur as death approaches.
She holds space during the moments of grief, fear and overwhelming emotion. She does not avoid difficult conversations. Your doula understands the pain because she has walked alongside many individuals and families on this journey before. While every experience is unique, the road is familiar to her. She creates a safe space where you can speak openly, whether privately or with family members and close friends.
Over time, trust grows. You begin to feel lighter. You recognize that with guidance, support and advocacy, you can continue living fully until death. You understand that you still have choices, and that your remaining time is precious.
Perhaps one of the greatest comforts is knowing that your doula’s support does not end when your life does. The deep bond you have built allows you to rest easier, knowing she will continue to support your family after your death. That reassurance matters. You feel empowered because you have participated in your own planning and decision making. You understand that while your disease may be progressing, your life is not over until it is over.
The key is to involve a doula early in the course of a serious illness. Doing so allows time for trust to develop, relationships to deepen and preparations to be completed according to your wishes. Building a relationship early allows time for meaningful conversations and thoughtful planning when it is needed most.
You are not alone. You do not have to do this alone. Together, we can do death better, with knowledge, understanding and support. It’s never too early to connect with an End-of-life Doula, but it is often too late.
Let’s talk.
Jayne Dill RN, Grief Educator, End-of-Life Doula
londondeathdoula.ca