Care in the IE: Death Doulas and The Most Important Conversation Most of Us Seek to Avoid

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During the majority of 2024, Black Voice News, with the support of the United Domestic Workers Union, presented the series, Will You Care for Me? Caregiving in the I.E. Over the previous nine months, we have covered every aspect of caregiving, including resources available in the inland region, the cost of care, caring for children, caring for adults, caring for adult children, the availability of caregivers, the importance of self care for caregivers, the shortage of caregivers and the growing demand for caregiving services and why. In the following article, The Most Important Conversation Most of Us Avoid,  is the last installment in the series. In this important segment, reporter Breanna Reeves discusses end of life care.

Breanna Reeves

Nina Bailey recalled her visits with her 92-year-old client who was in hospice care. Bailey would listen as her client talked about the difficulty communicating with her daughter, about being lonely, and the grief she felt because she was no longer able to care for herself.

“The dying part wasn’t even an issue for her. Honestly, she was just like, ‘whenever I go, I go,’” Bailey recollected. The grief that stemmed from no longer having autonomy over her life, over what she ate and when she ate — that was the hard part, Bailey explained.

Death and grief can be difficult topics to broach with friends and family. Like Bailey’s 92-year-old client, many people have no one to talk with about their grief or about their anxieties as they suffer from a serious illness or face death. 

This gap in support is why Bailey became a death and grief doula.

Death and grief doulas actively support individuals who may be experiencing serious illness or be near the end of their lives. She supports them and their families by discussing death, helping them with end-of-life plans and offering them comfort and companionship

Most people are familiar with a doula or birthworker — a nonmedical person who supports an individual who is pregnant, preparing to give birth or postpartum.

“Well, I do the same thing, except when people are leaving the earth realm. So, if they’re passing away, I provide the same type of emotional, spiritual, mental support for the person that’s either passing away or the loved ones that are around them,” Nina Bailey explained.

Bailey began supporting clients in 2022 after receiving a scholarship from Going with Grace, an organization that supports family members with end-of-life planning and care services. Going with Grace offers an End-of-Life Scholarship Training Program to individuals who are committed to their communities and grief support. 

Bailey spent nearly two years working in Upland as a death and grief doula, volunteering in the community and reaching out to local organizations to offer assistance. Bailey found that doing so was a good way to connect with families.

While becoming a death doula doesn’t require approval from a specific credentialed program, there are several training programs hosted by Going with Grace and other organizations such as the International End of Life Doula Association that also has several training programs. The National End-of-Life Doula Alliance (NEDA) created a credential called the NEDA Proficiency Badge which is awarded once doulas complete training and an assessment exam. 

When Bailey started the Going with Grace training program, she recently lost a grandparent. She assumed she would learn the ins and outs of caring for families as they navigate their loss, but she learned much more.

“We really need more people in this work because a lot of people don’t know about the logistics of what to take care of before you pass away,” Bailey explained.

Hospice care and palliative care: Differences and similarities

As a death and grief doula, Bailey has spent time sitting at bedsides, taking walks outside with those who are able and talking about their past. She realized that most of her work focuses on being present with her clients, talking with them and physical touch.

“They don’t have a lot of people to talk to; they’re missing out on touch a lot. So, there was a lot of  holding hands, or putting lotion on cream on people’s hands, things like that; playing music that they used to like to listen to,” Bailey described.

Bailey has been contacted by families who had loved ones in a hospice facility and require companionship, someone to sit and chat with them.

Hospice care focuses on improving the quality of life for people who have a terminal illness and are not responding to treatments or have decided to completely stop treatment. Hospice care can be delivered in a facility or at home. 

Many of the families Bailey supported were too busy to sit with their loved one given some of the costs not covered by hospice care such as certain medications and treatments. For beneficiaries with original Medicare, hospice care is cost-free as long as care comes from a Medicare-approved hospice provider. 

Beneficiaries who have Medicare Part A (hospital insurance) and meet specific conditions qualify for cost-free hospice care. Conditions include accepting comfort care instead of care to cure an illness; being certified by doctors that an individual is terminally ill (with a life expectancy of six months or less); and signing a statement choosing hospice care.

Palliative care is a form of medical care for people living with a serious illness. Palliative care is focused on providing relief from the symptoms of the illness and intended to improve quality of life for the patient and their family. Those who seek palliative care tend to be someone suffering from chronic disease like liver failure, heart failure or dementia, among other illnesses.

While palliative care and hospice care both focus on delivering comfort care, they differ in many ways. 

“People tend to lump them together. So, palliative care is when you have a serious illness. It doesn’t mean you’re going to die in six months.  Hospice is very clear that you have six months. No one would be surprised if you died within the next six months,” Dr. Mercy Kagoda explained. Dr. Kagoda is the medical director of Care Management at Inland Empire Health Plan (IEHP).

Dr. Kagoda oversees IEHP’s home-based palliative care program called My Path. The palliative care program delivers care at home at no additional cost and is intended for IEHP members who have an advanced disease, like cancer, congestive heart failure or Parkinson’s. With IEHP’s home-based palliative care, a team of professionals including a provider, a nurse, a social worker and a chaplain come to the home to address physical, emotional and spiritual needs of the patient.

Palliative care is covered under Medicare’s hospice care for those with serious illness, but coverage differs based on what part of Medicare coverage a beneficiary has. Medicare Part A (hospital insurance) covers inpatient hospital stays, care in a skilled nursing facility, hospice care, and some home health care. Medicare Part B (medical insurance) covers certain services delivered by doctors. 

But more often than not, home-based palliative services are not covered by most insurance plans. Instead, patients are required to seek care at the hospital.

“The whole point of palliative care, and palliative care coming to the home, is part of decreasing the suffering,” Dr. Kagoda explained. “We offer it in the home to help with, for example, minimizing the hassle of getting dressed, being in a waiting room when you are not feeling well, as you make it to yet another appointment.”

Delivering palliative care at home also allows the care team to get a better understanding of the patient’s needs, their care goals and what’s important to them.

Before end-of-life planning, start with advance care planning

Oftentimes, families are unprepared or unaware of what documentation and paperwork they’ll need once a loved one passes away. Bailey has witnessed friends close to her grapple with medical paperwork, credit card documents and insurance documentation. 

“You don’t even get time to grieve or anything because as soon as it happens, it’s like all these things are coming to you at one time,” Bailey said.

According to Bailey, end-of-life planning doesn’t have to begin while a loved one is at the end. Preparing for end-of-life can begin at any time. Planning can begin by gathering important documents, organizing them into folders and writing advance care directives. Experts emphasized the importance of keeping track of assets and financial documentation, and informing family members of where these documents can be found.

Dr. Kagoda also explained that advanced care planning is part of the My Path program. Advance care planning is the process of creating a detailed plan for one’s wishes if they become seriously ill, incapacitated, and unable to communicate their wishes. Advance care planning includes learning and listing health care options; determining types of care; and informing family, friends and providers about their wishes.

“If we look at the trajectory of our lives, I’d start off with advanced care planning. This is something that I’d recommend for anyone old enough to want to choose the type of care they’d want to receive, if they could no longer communicate their wishes. This would usually mean anyone 18 years or older. As difficult as this is, we need to start having these conversations sooner and even with teenagers because it’s even more difficult for our loved ones to be forced to make these decisions for us.” Dr. Kagoda said.

Advance care planning can begin with speaking to a primary provider or a death doula, like Bailey.

Bailey also recommends learning more about insurance plans and coverage such as employment insurance, and life insurance outside of work in the event an individual loses their job. 

“When something happens, like the grief is real and immediately your mind is kind of all over the place. It’s very hard to grieve and try to take care of logistics at the same time,” Bailey said. “I think people have this misconception that you have to wait until somebody is going to pass, and that’s just not the case.”

Caregivers and loved ones can begin planning by creating a checklist of documents needed, passwords, medical documents, and other paperwork needed. The National Institute on Aging has a checklist for those who want to begin planning.

Advice for caregivers and families

“It’s okay to say that you need help,” Bailey shared. 

For caregivers who are their loved one’s sole care provider, Bailey explained the importance of having a support system that consists of family and friends who will step in when needed. 

Bailey encourages caregivers and families to connect  with grief doulas or grief specialists who can offer resources and support. She also recommends connecting with a community of people who can relate. Organizations like the Inland Caregiver Resource Center (ICRC) offer resources for respite care as well as different support groups for caregivers. 

For caregivers considering hospice care for their loved one, Bailey also recommends doing research on the facility, taking a tour and even having someone drop in to check on their loved one. Bailey has visited clients in hospice facilities on behalf of a client’s family and has checked on their wellbeing.

In 2022, the California State Auditor released a report examining California’s hospice licensure and oversight, noting “the state’s weak oversight of hospice agencies has created opportunities for large-scale fraud and abuse.” The report specifically identified these issues in Los Angeles County and according to the report, the audit found several indicators of fraud including “rapid, disproportionate growth in the number of hospice agencies,” “long durations of hospice services” and “high rates of patients discharged alive.”

The report issued recommendations to the State Legislature, the California Department of Public Health and the California Department of Justice, stating, “the Legislature should require Public Health, Health Care Services, DOJ, and Social Services to immediately convene a taskforce to identify, investigate, and prosecute fraud and abuse by hospice agencies in that county.”

Following the release of the report, Gov. Gavin Newsom signed Senate Bill 664 which put a moratorium on licensing any new hospices. The duration of the moratorium has been extended until 2027. 

As the state works to increase hospice agency oversight, Dr. Kagoda advises individuals to speak with their doctor before signing up with a hospice agency and be cautious about what they offer. Families choosing a hospice facility or provider should make an informed decision, considering hospice care’s ultimate objective is to allow an individual a death with dignity.

“The same way we don’t want people to go into birth alone — we want them to have a community, I don’t want people to pass away alone,” Bailey said. “If we’re striving for this good life and we want equality and equity, I feel like that’s also deserved in death.”

This article is part of the 2024 Black Voice News reporting series on Caregiving in the IE supported in part by the United Domestic Workers of America representing home care and family child care providers across the state of California