Having the Death you deserve: End of life support options
Dealing with the end of life can be difficult, You’re processing the inevitability of your loved one’s death and trying to learn on the fly all the things you’ll need to manage now that the end is in sight. How do you decide which supports to use? what’s available to you? When can you access end of life care? and did you know that something called a “Death Doula” exists? Many think that the only option is Hospice, but let’s take a closer look at what a Death Doula is, and how it differs from Hospice.
What is a Death Doula?
A death doula, also known as an end-of-life doula or death midwife, is a compassionate companion who helps individuals and their families navigate the journey towards the end of life. Their role is to provide emotional, spiritual, and practical support, ensuring that the person facing death feels comforted and supported. Death doulas offer a range of services, including helping with legacy projects, facilitating meaningful conversations, and providing a comforting presence. Something important to note, a death doula is a non-medical person who’s role is simple to assist the person dying in their transition.
How is a Death Doula Different from Hospice?
While both death doulas and hospice care provide end-of-life support, they differ in their roles and approaches.
Timing of Support:
A Death Doula has the advantage of early involvement. They can be involved at any stage of the end-of-life process, offering support from the moment a terminal illness is discovered. This early involvement allows individuals and their families to establish a connection with the death doula and benefit from ongoing emotional and spiritual support throughout the entire journey. Typically, their involvement begins a year out from the anticipated transition. Another key role of a death doula is to assist individuals in planning for the end of life. This may include discussing and documenting preferences for care, creating legacy projects, and facilitating important conversations about life and death. The Death Doula also provides education and support for the family, they use medical info and understanding of the body’s natural dying process to help create awareness about what to expect and process what they’re experiencing.
Hospice care is typically initiated when an individual has a terminal illness and is expected to have six months or less to live. It is a specialized form of medical care focused on managing symptoms and enhancing quality of life. This timing is based on medical assessments, and hospice services are focused on providing comfort and support during this specific period. Hospice care is primarily designed to manage symptoms and enhance the quality of life during the final stages of a terminal illness. The focus is on addressing physical and medical needs, with an emphasis on palliative rather than curative care. What many don’t know about Hospice, is that you can be discharged from their care. If a patient survives beyond the 6 month timeline, hospice may review the current status of pain management, and where in the dying process a person is. They could decide that the end is not close enough and discharge a patient from care.
Scope of Services:
Death Doulas provide holistic support, including emotional, spiritual, and practical assistance, in the end of life transition. They focus on the person's unique needs and wishes, helping to create a meaningful and peaceful death for their client & the family. Death Doulas use various tools and resources to provide support in creating a legacy; they help write letters, compile photos, and create closure for any issue that may prevent an easy transition. The role and use of a death doula helps to decrease the engrained fear of dying many of us face. It’s less about “fixing” the physical issues, although they do help connect and provide resources for symptom management. Typically, Death Doulas partner with hospice and form relationships to help close the gap in services and care. The other key benefit of a Death Doula is they are not bound by the bureaucracy of insurance or the stringent parameters that can be associated with the medical industry. Death Doulas simply aim to provide the death you deserve.
Hospice is specific to managing medical care aimed at managing pain and symptoms related to the terminal illness. The use of Hospice involves a team of healthcare professionals, such as doctors, nurses, and social workers, to address physical and medical needs. The primary goal of hospice is to enhance the individual's quality of life by alleviating pain and addressing physical symptoms. It is not aimed at curing the illness but rather making the person as comfortable as possible.
Setting of Care:
Death Doulas can provide support in various settings. They can adapt to the preferences of the individual and their family. This may include offering assistance in hospitals, homes, hospice facilities, or any other location where the person feels most comfortable.
Hospice is mainly home-based. While hospice care is often provided in the patient's home, it can also extend to hospice centers, hospitals, or long-term care facilities. The emphasis is on creating a supportive and comfortable environment based on the individual's wishes.
I spoke with local Death Doula and former Hospice nurse, Carin Minkos to get the inside scoop on the Death Doula experience.
Carin tells me a lot of the work requires families (and herself) to get comfortable with being uncomfortable. This work is about honoring the life lived and helping her clients to find peace and joy with their transition.
She uses active listening to engage with clients and families; seeking permission is paramount. She asks the client for permission in offering guidance and education to create a sense of clarity and control, but also asks the family for permission when having conversations to gauge their willingness to receive information. There are certifications and training that are important for the role of a Death Doula, and her time as a Hospice nurse helps to give her a unique understanding of end of life care.
When the actual death event occurs, She just allows and encourages whatever responses come naturally from the family. It’s a lot of observing and holding space as the final curtain falls. She also reminds her families, that even after the death, they have access to her. Being witness and a part of such an intimate moment means that they become bonded and connected far beyond the “expiration of contracted services”, meaning it’s more than just her getting them to the finish line. She stays available and in contact with many of her families, telling them “you have me for as long as you want”.
Carin says that she encounters lots of opinions on what happens after death, but in reality, we just don’t know. Death Doulas work to help people let go of the fear of dying so they can embrace and enjoy the the life they lived as they head into their next chapter.
“Death isn’t a final ending, it’s the beginning of the next chapter”
In times of facing the end of life, both Death Doulas and Hospice play crucial roles in providing support and comfort. While hospice focuses on medical care and symptom management within a specific timeframe, death doulas offer a broader range of emotional, spiritual, and practical assistance throughout the entire journey. Understanding these nuances helps individuals and families make informed decisions about the type of support that aligns best with their values, preferences, and specific needs during the challenging times associated with the end of life.