This is the third in a four-part series about palliative care.
Palliative care physicians specialize in relieving suffering and improving quality of life for patients of any age and at any stage of cancer treatment, regardless of whether or not it can be cured.
This whole-body, holistic care can extend beyond the patient to include resources and support for caregivers and loved ones. We spoke with Chandana Banerjee, M.D., M.P.A., an assistant clinical professor in the Department of Supportive Care Medicine at City of Hope, about the role palliative care physicians can play in the lives of the people surrounding the patient.
Caregivers managing end-of-life care need different sets of skills
Many caregivers may feel they know what to expect when it comes to providing care and support for a loved one with cancer. Learning to manage the needs of the patient, while also attending to the caregiver’s own evolving psychological and emotional needs, can add strain, stress and anxiety to a caregiver’s life.
According to Banerjee, caregivers may need additional skills when caring for end-of-life patients. “Caregivers need to be sympathetic toward their patients, but they also need to be empathetic. Sometimes caregivers may be sympathetic, without really understanding what the patient is going through. Compassion is also extremely important; you may not be the most experienced caregiver or team member, but compassion will allow you to always make the right decision for the patient.”
According to Banerjee, patience is also critical.
Sometimes the journey can take hours to days, and it can be a difficult time not just for the patient, but also for the caregiver.”
End-of-life caregivers face unique challenges that may be hard to anticipate
“Many times, death is unexpected, either due to sudden events or rapid disease progression,” said Banerjee. “During these times, caregivers may find themselves confused, shocked at the sudden loss, or even feeling angry or betrayed by the medical team.”
Because these feelings can appear suddenly, it’s important for caregivers to seek the support of friends, family and spiritual leaders as early in the grief and bereavement process as possible.
“Families need to start preparing early for the impending loss,” Banerjee said. “This means not only making sure you have a good support system, but also guidance from the oncology, hematology and supportive medicine clinicians to understand disease progression and what to expect at the end of life. It can be difficult to navigate that emotional journey on your own.”
Banerjee also stresses the important role of social workers and child life staff, who can help identify additional needs, especially when children are involved. “Children may find it difficult to comprehend what is happening to their parent or loved ones,” Banerjee said, and these teams can help.
Burnout can affect end-of-life caregivers, too
Even the most patient, compassionate and sympathetic caregivers may eventually reach a point in the process where continuing to provide care may seem impossible, as emotional strains continue to mount. This is normal, but potentially avoidable, according to Banerjee.
We’re all human. And we all have our own capacities for compassion and care, particularly when helping family members who may seem to want to walk this journey alone. Even the best caregiver can burn out and no longer offer the best care for both themselves and their patient.”
Banerjee reminds us that the path to successful caregiving may lie in acknowledging our strengths as a group. “We are a society, and we all need to rely on the support system of family and friends, and seek the support of other caregivers who understand what we are going through.”
Avoiding caregiver burnout is particularly important for those providing end-of-life care.
Close family and friends need to attend to their own needs, both physically and emotionally,” Banerjee said.“They need to be able to support not just the patient on his or her journey, but also each other. If you don’t take care of yourself, you won’t be able to be an effective caregiver.”
Caregivers can use palliative care doctors as a resource
“Palliative care physicians are trained to treat not just the underlying disease, but to take a holistic approach to the total care of the patient, both individually and in the context of their families,” Banerjee said. This can include practical concerns including pain management or providing care for nausea or vomiting, as well as spiritual and psychological care. Providing a custom-tailored treatment plan that is unique to the needs of both the patient and his or her family is key.