Death Doulas for People With Breast Cancer

When a person with breast cancer nears the end of their life, a death doula is one option for support and guidance. This nonmedical professional can help both the person who is dying and their families navigate end-of-life care, including hospice. 

Death doulas, also called end-of-life doulas, help people decide what kind of care they want and develop a plan to make sure they receive it. They may have open conversations about death with families and loved ones, help them process difficult emotions, and provide respite for caregivers. They can help you decide when hospice care is appropriate for you.

Some people may start working with a death doula soon after an advanced breast cancer diagnosis, while others may seek support closer to death. 

Early on, the focus is on getting to know each other, building trust, managing gaps in your care, and building a support network. You may continue to meet with your doula regularly, or you might only call them when you need assistance. This stage can last for several years, until death is more imminent and you need more intense support.

When death is more imminent, your doula may visit you weekly, several times a week, or even daily. You get to choose how often you want to see your doula and what they do for you.

“We like to be flexible, we like to be available, and we like to help out in whatever way possible to make the experience as good for you as we can,” Chang says.

After death, doulas can support loved ones through the early stages of grief. They can help process emotions, provide coping mechanisms, and organize obituaries and funeral services.

There are four areas of support that death doulas can provide, explains Virginia Chang, Ph.D., an end-of-life doula and doula instructor at the University of Vermont Larner College of Medicine: physical, emotional, social, and spiritual.

Physical support includes logistics. For example, a death doula can help you fill out paperwork such as an advance care directive, a legal document that tells medical professionals what treatments you do and do not want to receive. They can coordinate care, such as setting up medical appointments and arranging transportation to them. They work with family members to plan who will share caregiving responsibilities and when. They can help set up your home to accommodate a wheelchair, hospital bed, or any other equipment you may need. 

End-of-life doulas can also provide emotional support to the dying person and their loved ones. “There is a huge range of emotions that are experienced when anybody gets ill and is then faced with imminent death,” Chang says. A doula can help process grief, and manage feelings of guilt, shame, and uncertainty, while you navigate difficult decisions so you can continue to make the best choices for yourself at the end of life.

Death doulas can assist in setting up a support network. “When you're ill, it's really important to reach out to others, to lean on others, and to create a community where you still feel whole,” Chang says. Doulas can connect you with the people you want to see or talk to near the end of your life. They can teach you how to ask for support, educate friends and family on how to show up for you, and can also provide companionship to ease loneliness. 

Spiritual support can involve religion but doesn’t have to. Death doulas are not trained in spiritual care, as hospice chaplains are, but they can talk to you about finding purpose in life, the impact you’ve made, and what legacy you want to leave. They can also help you with legacy projects such as letters or memory boxes.

The support provided by a death doula can overlap with hospice care, but they’re not the same. You can receive care from both at the same time. Some hospice centers may even have a death doula. 

Cost

Hospice care is fully covered by most health insurance plans, including Medicare. Because private death doulas are relatively new — and there hasn’t been much scientific research on their benefits — their services are not covered by insurance. That said, hospice is covered by insurance but also regulated by it, while a death doula is an out-of-pocket cost but tailored to your needs. 

Eligibility

Another difference between the two is that hospice care is only available to people with a limited life expectancy who no longer want aggressive breast cancer treatment. (For Medicare or Medicaid, that limit is up to six months, but private insurance companies have their own timelines for terminal diagnoses.) But anyone can hire an end-of-life doula, no matter how long they’re expected to live or what treatments they’re receiving. 

Care

Hospice care includes medical care, such as pain management and treatment of non-cancer conditions such as infections. It supplies comfort medications, adaptable medical equipment, and medical supplies. End-of-life doulas do not have medical training and don’t provide medical care. A death doula supports your care by advocating for your care goals while helping you navigate the complex healthcare system. 

End-of-life doulas also don’t have specialized training in providing social, physical, emotional, and spiritual support, whereas hospice therapists, social workers, and chaplains go through extensive training — both academic and clinical — in their areas. 

However, hospice staff are limited in the amount of time and attention they can give to each person. If you’re in hospice at home, you may only receive one visit per week. Even in a hospice center, the amount of support you receive may be limited. End-of-life doulas generally work with fewer people, so they can be with you more often. 

“End-of-life doulas are an extra set of eyes and ears that are trained in end of life to supplement and enhance what hospice can offer,” Chang says.

Costs vary depending on where you live. Some doulas charge between $25 and $150 per hour, with an average rate of $85 per hour. Others charge a flat fee, which can be anywhere from about $500 to more than $5,000, with an average fee of $1,500 to $2,000. Some may charge using a sliding scale based on your finances. 

Hiring a private end-of-life doula may be right for you if you want more support than your family, friends, and a hospice team can provide and you can cover the cost. 

Two major organizations have end-of-life doula directories: the National End-of-Life Doula Alliance and the International End-of-Life Doula Association. 

If you aren’t able to find a doula using these resources, Chang recommends calling local hospices and mortuaries to ask if they can recommend nearby end-of-life doulas.

When choosing an end-of-life doula, fit is extremely important. “You want someone that you can trust, that you can talk to, and that you can be honest with,” Chang says. “Go with your gut.”

It may be hard to assess a doula’s qualifications since there’s no standard degree or national credentialing standard for doulas. However, some organizations, like the National End-of-Life Doula Alliance and the International End-of-Life Doula Association, offer certification.

For those who can’t afford a death doula, hospice is a valuable support at the end of life. Hospice teams have volunteers who may be able to provide support that’s similar to what a death doula provides. And hospice teams include medical, spiritual, and emotional support while managing symptoms and meeting care needs for people, no matter their available resources.