One of the exciting developments in the death system is the arrival of the Death Doula. Many of us know the term “doula,” refers to a woman trained to help with the birthing process. A death doula is a person who is trained to help with the dying process. In my town, Santa Barbara, I know two women who have become death duelas after years of other work as Hospice volunteers. They have set up an informative website, www.dyingingrace.com and, as members of the AnamCara Death doula organization, they provide services free of charge to members of the community, as do many death duolas across the country.
A death doula must have a great deal of experience with dying people and be able to provide individualized support for patients and their families who are looking for a more comfortable and conscious experience of dying. They can provide practical, emotional, and spiritual support during the dying process both during, and after a terminal illness.
Death doulas can assist dying people to create meaningful advanced directives and choose a healthcare agent. They can facilitate a conversation with that agent and the family so that everyone understands what quality of life means to the person who is dying and what procedures and treatments they are willing to purse in order to prolong life. They can help the family understand the meaning of the diagnosis and prognosis when confusion and misunderstanding occur as the family comes to grips with their new reality.
Death duolas are committed to helping people get their affairs in order. They can help the dying person organize critical information in a death file. A death file contains all the financial and legal information that family needs, including passwords and Web IDs as well as thoughts about an obituary, plans for a funeral, and disposition of the body. This kind of information can make a huge difference in the stress and conflict that may erupt when families experience when a loved one dies.
Death doulas can also act as advocates with health professionals, insuring that patients get all their questions answered and concerns addressed by doctors and social workers. They can help patients understand when to call for hospital services or enter a hospice. Most of all, can assist the dying and their families accept, even engage, dying if they are willing, learning how to say good-by, and how to create the rituals and processes that will support families through bereavement.
Guided visualizations are often used with the patient and family. Duolas can provide spiritual counseling or referrals to clergy, counselors, and community resources. They can show a family how to create a vigil space or know when to accept the comfort care provided by a palliative care teams. They can help insure that the dying person is comfortable and has a way to finish communication with family and friends. They can help the dying create a legacy, curating the things that were important—pictures, poems, songs, art that they loved can be collected and organized so that others can appreciate what they meant and how dear they were.
Finally, according to our Santa Barbara duolas, they help the family decide what kind of caretaking they are able and prepared to provide. Most people express the desire to die at home these days, but dying at home is a complicated and challenging process. The family must gather up all the equipment, supplies, and medications required; they must be able to tolerate the discomfort of the patient as well as their own fear and, often, exhaustion. They often have to move a patients who can no longer walk or even sit on their own or they must have the money to hire help. The family must often be prepared to entertain visitors, set good boundaries around visiting, and deal with the grief that visitors often feel as they walk out the door. Visitors tend to be very cautious around dying people, but fall apart with caregivers and family that are already stressed by their own grief.
Good death doulas have certain key attributes. They need to be compassionate, organized and experienced with patients who have died. They must provide a steady hand for the family and be able to face and engage dying themselves. They must be familiar with the resources in the community and able to discuss difficult things without sugar coating the truth, but also know when the dying person or the family can hear those things.
Most families don’t really understand a lot of what happens when a member is diagnosed with a life-threatening illness. They may feel confused about the diagnosis, treatment options, or prognosis. They don’t know what resources are available to them. A social worker may tell them once, but they need more time and repetition to get it. They don’t know where to start or what to do next and end up feeling frozen. A doula can help with all of this, giving the family the time they need to process what has happened and plan for the future. They can come when the family calls. They can be sensitive to what the family needs and they understand that what should be done depends on where the patient is and what the patient and the family want.
In the final phase, duolas can help the patient and family design or deploy rituals that comfort survivors and celebrate the life of the dying person. But, there are also important limitations to what duolas can provide. They cannot give medical advice or perform tasks appropriate for nurses, doctors or other medical personnel. They are not lawyers, so they can help families fill out the forms and make decisions, but they cannot guarantee that the forms will be accepted as legal documents. They are not psychologists or psychiatrists. They don’t do therapy or prescribe drugs that relieve pain or lift depression and calm anxiety.
What can expect that a doula will:
- Provide social/emotional support from onset of the illness to the final moments of life.
- Be familiar with community resources and able to help people access them.
- Help the patient organize critical forms and financial information.
- Advise in the choice of a healthcare agent or an executor.
- Make sure families get their questions and concerns addressed by health professionals.
- Advocate for the patient in a healthcare setting.
- Ease the fear of death and help people say goodbye.
- Support dying at home and also point out when families need hospice and palliative care.
- Help the patient and the family create a legacy and design rituals.
- Be present to support families through bereavement.
The National Hospice and Palliative Care Organization (NHPCO) hosts the End of Life Duola Council and provide more information about the work and accreditation of duolas. While there are no national standards and anyone can say they are a doula, there are a number of certifications available. You should ask anyone you are considering about their experience and what certifications they have received. You might also want to check out The International End of Life Duola Association, an organization that provides training for duolas.