Home hospice is critical in at-home death, but it may not fully serve the individual’s goals for dying at home. End-of-life doulas may help.
Seventy-one percent of Americans prefer to die at home, Kaiser Family Foundation says, and 71 percent prioritize relieving pain and stress over prolonging life. Home hospice is critical in at-home death, but it alone may not fully serve the individual’s goals for dying at home. End-of-life doulas may help close that gap.
Home hospice services make dying at home more feasible, providing nursing oversight for pain management, resource referrals, spiritual support, and grief counseling. However, there are certain inherent limitations to home hospice. Understanding both the advantages and limitations can help make home hospice as beneficial as possible.
Common hospice myths
Many people believe that home hospice provides around-the-clock, full-service care. Realistically, home hospice nurses visit multiple patients daily rather than being dedicated to one individual. Quality of care is not the issue, but time with the patient may be. Most often, hospice begins with two to three weekly nursing visits. Over time, these visits may become less frequent. During the last seven days of life, skilled nurse and social worker visits average a total 57 minutes, according to the Federal Register.
Another common misperception is that the hospice services are automatic. On the contrary, these services are typically coordinated by the attending nurse on request. Therefore, families must anticipate needs in order to advocate for them, without necessarily being equipped to do so. Also, in some states, hospice programs may not recognize loved ones as legal advocates. Hospice programs also do not cover bereavement counseling for non-relative loved ones or for relatives living out of state.
Navigating the dying process
It is possible to complement home hospice with other services, such as end-of-life doula services, to overcome these inherent gaps. The end-of-life doula approach is based on the birth doula model, wherein a doula guides a woman and her loved ones through her birthing process. Similarly, the end-of-life doula provides emotional, spiritual, and physical support for a person and their loved ones at the end of life.
Unlike home hospice, the end-of-life doula works with families to tailor the appropriate frequency, length of visits, and scope of work to suit their needs. This may include sitting vigil as well as collaborating with the individual and their loved ones to design and conduct rituals that bring comfort to the dying, honor their being, and celebrate their transition. The end-of-life doula utilizes their expertise to offer an expanded view of dying that can bring greater meaning and comfort to this intense process. The doula will work with the person dying to help them examine regrets and bring closure to unfinished business they may wish to resolve in their lifetime.
Doulas may also help design and support post-death rituals for the solace of family. Often, doulas continue to work with loved ones for a defined period of time as they navigate their grief.
Doulas and hospice
The end-of-life doula is not a medical practitioner and should not be considered an alternativeto home hospice. Yet, the doula brings an invaluable, powerful component to ease a person’s transition from this life for all concerned. Therefore, the optimum scenario for those dying and their loved ones may include the combination of home hospice and end-of-life doula service.
If your community hospice programming does not include doula service, you may hire one individually. Doula service is not covered by insurance; however, many doulas use a sliding scale for fees or work pro bono when needed. Before hiring a doula or doula collective, ask about their credentials, including formal end-of-life doula training from an established, reputable training organization.