— It should be public health priority
Health care institutions and their staffs must take action to ensure bereavement care shifts from “an afterthought to a public health priority,” according to a position paper published in The Lancet Public Health.
Bereavement support often is considered part of palliative care; however, there often is a lack of continuity of care for bereaved individuals after a person dies in palliative or end-of-life care settings, the paper’s authors contend.
This care gap can leave bereaved individuals with feelings of abandonment and lack of access to support services, as well as increased risk for morbidity and mortality.
“When we have a model of family-centered care, which many institutions promote, bereavement care should be included in that. Care shouldn’t stop the moment the patient dies,” co-author Wendy G. Lichtenthal, PhD, founding director of the Center for the Advancement of Bereavement Care at Sylvester Comprehensive Cancer Center, part of the University of Miami Miller School of Medicine, told Healio. “The question is, how do we support oncologists to continue that care, recognizing that at this time, the system isn’t really built to support that?”
Healio spoke with Lichtenthal about what bereavement care encompasses, why it should be prioritized and how institutions can support grieving individuals who may require assistance.
Healio: What does bereavement care entail and why is it important?
Lichtenthal: If we think about it in isolation, without considering the context of the health care system, bereavement care is care for those who lost someone important to them. When we think about care of the bereaved, we should think about providing a level of support that is aligned with that individual’s needs. Public health models of bereavement offer some guidance about what different grievers may need. There is support that most people might benefit from — general education about the grieving process, as well as compassion and understanding from a “grief literate” community. Ideally, this kind of support is available from friends or family, in the workplace, and in religious institutions or schools. These types of resources are adequate for maybe 60% of grievers.
Then there is a middle tier — representing about 30% of bereaved people — who could use something a little more formal. Maybe it’s a support group with other bereaved individuals or consultation with a mental health provider. Maybe it’s a counselor who provides psychoeducation about what to expect and helps validate their experience.
Then there’s about 10% of the population who struggles more, for whom it would be indicated to have mental health providers who are specialists in grief and understand its ripple effect and impacts on mental health.
When we build bereavement care into the health system, that process of supporting family and friends who will be impacted by the loss can start before the death of a patient. We want to promote “bereavement-conscious care.” Being bereavement-conscious means being mindful of the fact that so much of the illness experience stays with someone after a person dies and thinking about how to reduce the likelihood of guilt, regret or anger for that person in bereavement — to the extent that this is possible, of course. A primary goal for caregivers is to protect the well-being of the person they care for. When the outcome is death, it is incredibly common for them to experience guilt or regret, wondering if they should have done more or should have done something differently for the patient. Those in the health system who interact with caregivers can be mindful of this while the patient is alive, offering reassurances and decision-making support. They can also be there for grieving family or friends after the patient’s death, providing them with information to help them make sense of what unfolded so the caregiver is less likely to blame themselves. Of course, although clinicians may be able to be helpful to grievers in these ways, we recognize that sometimes the reactions bereaved caregivers or family members have are well beyond clinicians’ control.
Healio: What role should oncologists play in bereavement care?
Lichtenthal: When there is an expectation that a patient will die, oncologists can be mindful of the fact that those closest to the patient may have specific needs. They range from involvement in care conversations and the decision-making process to obtaining professional psychosocial support. After the patient dies, the ideal is some sort of bereavement aftercare, such as offering condolences to those grieving and connecting them to bereavement support resources.
Unfortunately, the system is not built very well for providing continued care after a patient dies. There aren’t billable hours or a CPT code that an oncologist can use to account for their time.
There are other challenges to providing bereavement aftercare. Oncologists naturally may have an array of feelings, including their own grief for the patient, or a sense of responsibility for the outcome. Reaching out can feel very loaded. Or they might really want to make a condolence call but want to make sure they have enough time, and a window of time that feels large enough never comes.
But these are systems issues. Time for bereavement care is not built into the system. We need to do more to support that continuity of care, though, because, by and large, bereaved individuals really appreciate that care and to know that the patient mattered to their oncologist. Sometimes, when the outcome is not ideal, there might be the perception that those grieving are angry and outreach would not be welcome. Although there are no guarantees, reaching out may actually help with that. Clinicians can ask themselves, “Would I rather err on the side of making them angry because I reached out, or making them angry because I didn’t reach out?”
I share all of this maintaining complete compassion for the oncologist’s position. Again, the system is not currently built to support engagement in bereavement care. It’s important to do but also utterly hard to do within the current health care structure. We need to make systems-level changes that include protected time, resources, training and tool kits for bereavement care.
Healio: What steps could be taken to make this more of a public health priority?
Lichtenthal: There are so many layers. We can continue to demonstrate the toll that bereavement takes on individuals and on clinicians. There could be more funding for research on bereavement because whatever we are doing to support clinicians and the bereaved should have its roots in science.
Funding can also be invested in developing and implementing training for health care personnel and clinicians to educate them on grief and bereavement and to support engagement in bereavement-consciousness care. Right now, this kind of training is not standard in medical education. Yet, we want providers to feel empowered and not at a loss about how to best support grievers. In addition to incorporating grief and bereavement into training programs, we can build tool kits to help with bereavement aftercare and with determining when a griever may have greater support needs.
Documentation is also important. Ideally, caregivers and chosen family members would be have documentation in the medical record so that we can continue to offer care for them after a patient dies. Resources like support groups, referrals or other resources are not available at every institution, but there should be a way to provide that care to the bereaved. The ideal would be to build these resources into the institution so we could support grievers at the appropriate level of need. At a minimum, we should be offering compassion and acknowledgement of their loss, then helping them to transition to community care over time.
Our transitional bereavement care model calls for multiple pillars:
- ownership of bereavement care, through which institutions provide bereavement education for staff, risk screenings for families, and grief counseling or support for the bereaved;
- resource allocation for bereavement care;
- upskilling of support providers in the health system and in the community; and
- promotion of evidence-based bereavement care.
At our institution, we are building the Center for the Advancement of Bereavement Care to bring this transitional bereavement care model to life. Our mission is to improve care of the bereaved by disseminating evidence-based supports. We want to provide resources and training rooted in research and science. We aim to promote grief-informed care and bereavement resources within the health system while bolstering community supports so that grievers can receive the compassion and appropriate level of bereavement care they may need from their communities. Ultimately, we want to help make bereavement care a standard part of comprehensive cancer care.
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