Greater education and preparation around the logistical aspects of death and bereavement is needed to better support grieving families. This reality is driving some hospices to forge stronger collaborations with providers of after-loss services. 

Bereaved families often face tremendous challenges fielding a barrage of tasks following a loved ones’ death, according to Grant Marylander, grief counselor at Trail Winds Hospice, which provides adult and pediatric hospice and palliative care. Marylander is also a licensed clinical social worker and practiced law for 35 years prior to stepping into health care.

“One of the greatest challenges facing bereaved families when a loved one dies is the lack of a will or other estate planning tool (for example, living trust),” Marylander told Hospice News in an email. “Loved ones must navigate the labyrinth of bureaucracy to make necessary changes to social security or other government benefits, change title on homes and cars and obtain access to financial institution accounts and veteran benefits.”

Logistics complicate grief journeys

Coping with the logistics of a loved one’s death can complicate the grief process, said Deneale White, a clinically trained chaplain with more than 30 years of experience in social and ministry services.

White serves as bereavement coordinator and chaplain at Kansas-based Interim HealthCare of Topeka. Interim is a national franchisor of home care, home health, hospice and medical staffing services and a portfolio company of Caring Brands International.

“[It] can be very challenging and overwhelming when added to the juggling of terminal illness and death,” White said. “Loss of relationship, loss of home, loss of companionship … Following their loved one’s death, these factors can often complicate grief for the bereaved and increase a feeling of guilt and regret.”

The nation’s fragmented health care system does not adequately support or prepare individuals for a loved one’s death, said Jasmine Hathaway, co-founder of Professionals of After-Loss Services (PALS).

A large issue is a lack of coordination between providers of end-of-life and serious illness care and services in the post-death landscape, Hathaway stated. Hospices may have collaborative connections, but face challenges with limited bandwidth among interdisciplinary teams, she said.

“Hospice workers do such a good job of pointing people in the right direction with the resources that they give them, it’s just typically limited with prolonged support that after loss professionals can help with,” Hathaway told Hospice News. “The biggest gap is that they want to help, but can’t continue to work with clients past a certain time frame as they resolve all these practical tasks that fall to them after a loved one’s loss. What happens is that a lot of logistical details can take longer, because the family member is trying to grieve that loss.”

Hathaway founded PALS after her husband died of terminal cancer in 2015. She was eight months pregnant at the time and navigating several tasks while grieving and seeking medical care, an extremely challenging feat that came with several financial and logistical burdens, she indicated. Seeking out assistance and resources to field her husband’s estate, assets, medical and personal bills made the grief process mentally and emotionally difficult, Hathaway stated.

Hathaway’s challenges inspired the launch of PALS’ after-loss services in 2021. The company trains after-loss professionals around best practices in fielding estate project management and assisting with administrative, logistical and practical needs.

Hospices could benefit from forming collaborative partnerships with after-loss service providers, according to Hathaway. These services can assist bereaved families with aspects such as life insurance and veteran benefits, contacting social security, closing accounts and transferring vehicle titles/ownership. Additionally, after-loss professionals can help families understand how to handle a deceased person’s digital estate such as social media, email and online accounts and subscription-based services.

Collaborating with after-loss providers aligns with the holistic approach involved in hospice care, according to Hathaway.

“It’s important to look holistically at everything that’s falling to the bereaved person and not come in with preconceived notions or a particular checklist,” she said. “We look at everything that is challenging them and break down tasks into small, achievable chunks to smooth that path and make sure nothing falls through cracks. Equipping someone in a hospice setting with the knowledge of where to point people is a huge step in understanding which referrals might help them. [Hospice] organizations could help fill that gap and reach across the other line, so to speak.”

Improving bereavement support

Some families are more prepared to handle the financial aspects of a loss compared to others, said White. Being prepared to deal with funeral and memorial costs alongside personal assets has resulted in spouses and families experiencing limited financial stress post-death, she explained.

Grieving loved ones unprepared to navigate the financial burdens face a number of challenges, according to White. The most significant of these obstacles occurs when an individual passes while their spouse requires facility-based or round-the-clock care without financial assistance or planning pieces put in place to support their needs.

“A bigger challenge we often see is for those couples facing financial burdens related to the need for inpatient care in an assisted living or skilled nursing facility. If the couple has not prepared for this financially, this can be a huge strain,” White said to Hospice News in an email.

In some instances, these couples have navigated separation of assets in order to cover the costs of care, she added. Others have considered divorcing due to financial reasons, such as the need to finance skilled nursing or assisted living facility placement.

An important part of any bereavement program is ensuring that families are informed that these supportive services and resources are available and accessible to them, White stated.

Hospices’ bereavement programs should include providing families with a “roadmap” of logistical, financial and legal steps to take following a loss, according to Marylander. This involves having a list of resources to help people identify the appropriate agencies they may need to contact regarding a loved ones’ benefits, including seeking assistance from local estate lawyers.

Educating hospice patients’ loved ones early on in their end-of-life journey is an important part of providing quality grief support, he stated. This involves having a team well-versed in the logistical resources available to families, Marylander added.

“Families often share how overwhelmed they feel by all the tasks before them,” Marylander said. “One of the keys to supporting loved ones navigating the practical and logistical challenges following a death is education. One-on-one counseling can help validate the concerns and provide both practical resources and tools to reduce anxiety and distress.”