Supporting cancer family caregivers: How can frontline oncology clinicians help?

A recent wave of research priority consensus papers, clinical guidelines, and organizational reports including one by the National Academy (formerly the Institute of Medicine) resound with a common theme: there is an urgent need for a transformation in the support we give to the 2.8 million unpaid family members caring for our patients with cancer.^1–4 The National Academy report details many of the system-level changes that will be necessary to support these family caregivers such as policy and payment reform and changes to employee leave and social services. Under the current system, there are formidable barriers to clinicians addressing caregiver concerns, including insufficient time, limited reimbursement mechanisms, and difficulties in timely access to specialist services (e.g. palliative care).³ However, system-level changes are unlikely to occur without a groundswell of demand from consumers, i.e., the caregivers themselves. This raises an important question: What can frontline oncology clinicians – including physicians, nurse practitioners, psychologists, nurses, social workers, case managers, and others - realistically do in their clinical encounters to empower, engage, and support family caregivers?

When we look at what is currently happening at the clinician-level to support family caregivers, the room for improvement is vast. A 2015 national survey by the National Alliance for Caregiving ¹ found that only 1-in-2 cancer caregivers are ever asked by healthcare professionals what they need. When they are asked, caregivers report needs that are numerous and complex.⁵ Paradoxically though, caregivers will often not vocalize these needs, and while some caregivers are proactive in seeking out services, most do not.⁶ Many are overwhelmed with their caregiving responsibilities. Others dismiss their own needs due to the belief that the focus of care should remain solely on the patient.⁷ Even when healthcare providers do ask them about their needs or how they are coping, many caregivers may minimize their needs or distress, wanting to present themselves in a positive light.⁸ This means that simply asking questions may not be enough.

Based on a burgeoning research literature on cancer caregiving and on our own clinical and research experiences that have focused on cancer caregivers and patient-caregiver dyads, we offer several specific yet simple messages that oncology clinicians can easily integrate into their clinical encounters when communicating with caregivers without necessitating large system-level changes in services. We believe that expressing these simple messages to caregivers, while brief, could be transformative.

First, acknowledge the essential role that caregivers have in the patient’s care. Seventy-two percent of cancer caregivers perform complex healthcare tasks in the home (identical to what one would see professional nurses performing in an inpatient setting).¹ They manage and administer medications, including injections, patches, intravenous medications, opioids, and chemotherapy; operate and troubleshoot home ventilators; perform ostomy, tracheostomy, and wound care; perform catherizations; and prepare meals with specialized diets.⁹ We as a professional healthcare community are highly reliant on families providing this medical care. We therefore encourage oncology clinicians to explicitly acknowledge this when family caregivers are present at the clinical encounter. “Mrs. Smith, I’d like you to know that you are an extremely important part of the healthcare team. We are very appreciative of everything you do at home to take care of your husband and are here to help support you.” Saying these simple remarks can do two things: First, it acknowledges to this family member that they are valued and important. This may mitigate some of the common feelings that caregivers report about feeling invisible to the healthcare team. Second, acknowledgment and appreciation may also empower caregivers to ask for assistance in this role.

A second key message is to be upfront and honest with family caregivers that this role can be overwhelming and that there will likely be times that they will need extra practical and emotional support. On average, individuals are in the cancer caregiving role for 1.9 years and 32.9 hours per week.^1,10 During this time, a large proportion of caregivers will experience adverse effects from caring for patients: Up to half report psychological distress in the form of anxiety and/or depressive symptoms, a quarter have high financial strain, and one-in-five report negative physical health effects.^1,11 Consider saying to caregivers of newly-diagnosed patients: “While being the one with cancer is no walk-in-the-park, it can be equally difficult—and sometimes even more difficult—to be in the role of a family member who supports this person day in and day out. It is likely that there will be times you will feel overwhelmed; this is entirely normal and does not mean that you are not a good spouse/child/brother/sister. It’s simply the nature of the situation. When you feel this way, it’s important to reach out for help.” This message serves to normalize the distress they are likely to feel at some point along the caregiving trajectory.

Third, emphasize to caregivers that self-care is an essential component of being able to provide good quality care to their loved one. Say: “Mrs. Parker, it is essential that you take care of yourself as you care for your husband. When you are on an airplane, the flight attendants tell you that, in the case of an emergency, put on your own oxygen mask before assisting someone else. It’s the same thing here. If you don’t take care of yourself, you are not going to be able to take care of your husband. Taking the time to do things like address your own medical issues, exercise regularly, and get adequate sleep is not selfish, it is a critical part of caregiving.” Giving caregivers explicit permission for self-care may be essential to the caregiver’s willingness to seek care, and to take time needed for important self-care behaviors such as sleep, exercise, and attending to their own medical issues. Many caregivers may feel guilty about taking time to care for themselves, as they feel that all of their time and energy should be focused on the patient. These messages also reduce the stigma that is often associated with help-seeking behavior, particularly psychological support.¹²

The importance of caregiver self-care cannot be overstated. Evidence suggests that caregiver and patient well-being are interdependent.^13,14 The patient’s suffering impacts the caregiver and vice versa. Caregivers who are in poorer health report delivering poorer quality care, which can negatively impact the patient.¹³ There are also strong associations between caregiver and patient distress.^14,15 The mechanisms for this association are numerous, and include for example, patients feeling like a burden on their loved one, suboptimal care provided by caregivers whose own health is tenuous, and more strained interpersonal interactions (e.g., a depressed caregiver being less emotionally available to the patient). Cancer patients often report that one of their top concerns is the impact their cancer has on their family members. Thus, addressing caregiver needs is essential for the well-being of the patient as well as the caregiver.

Finally, provide caregivers with information about hospital, local, state, and/or national resources that are available and encourage their utilization: “Here is a list of resources that may be of help to you. Many of the caregivers we work with have found these helpful. If this is not something you feel you need now, it may be something you want to explore in the future. I would be happy to discuss this with you at any point.” Often, it is only the caregivers who are visibly distressed who receive referrals, and the vast number of caregivers who present themselves as “doing fine” never know of the existence of the resources that may be available to them. Institutions that have access to resources such as social workers and local support groups should ensure that caregivers are aware of their existence. For the cancer centers that do not have on-site resources for supportive care, caregivers can be given a list of the many local, state, and national organizations and resources such as Geriatric Education Centers, Area Agencies on Aging, the National Alliance for Caregiving, the Cancer Support Community, and Cancer Care.

When possible, providers should also partner with researchers who are doing work in this area, and encourage caregivers to participate in research studies for which they qualify. Organizations such as the American Cancer Society, the National Cancer Institute, and the National Institute for Nursing Research are funding increasing numbers of high quality studies focused on assessing caregiver needs and/or testing caregiver support interventions; caregivers who participate in such research could benefit directly from participation as well as indirectly through contributing to the science of caregiving. Without high quality evidence demonstrating the value-added in supporting caregivers, payers and institutions will be unlikely to invest in these types of services.¹⁶

We encourage oncology clinicians to deliver all four messages above starting at diagnosis and repeating them periodically over the patient’s illness trajectory through end-of-life and bereavement. Results from one author’s randomized trial of early palliative care support for cancer family caregivers found that the intervention, which was initiated at the time of diagnosis and emphasized all of the above messages, showed marked benefit for caregivers 12 weeks later as well as 36 weeks before the care recipient’s death.¹⁷ There was also some indication that these benefits might extend into the bereavement phase.¹⁸ At the time of diagnosis or initiation of treatment, caregivers are often highly anxious about the patient, energized by their desire to provide assistance, and not yet impacted by the rigors of the caregiving. While they may not anticipate their future needs, they are likely to appreciate the clinicians’ concern for their well-being, and these early messages may make them more willing to ask for help later when they need it. And because the experiences, coping strategies, and needs of a caregiver evolve as their care recipient’s cancer trajectory plays out over time, reiterating these messages periodically will increase the chances of them acting on the advice and leveraging different resources as their need and relevance becomes more apparent.

When all the aforementioned messages are delivered to both the patient and caregiver, these messages may have a positive side effect of giving the patient permission to provide support to the caregiver⁸ and encourage him or her to seek help when needed. This might seem counterintuitive given that patients are the obvious recipient of care. Yet, evidence suggests that patients are both capable and desirous of providing support to their caregivers.¹⁹ Efforts by patients that help to maintain a semblance of normality and balance in the patient-caregiver relationship may positively benefit both parties. Serious, prolonged illness tends to destabilize the normal give-and-take in family relationships. Acknowledging the patient as a potential source of support to the caregiver can help maintain equity in the relationship, protect against caregiver burnout, and increase the patient’s sense of self-worth.

In conclusion, there are simple messages that frontline oncology clinicians can start communicating today in their clinical encounters to start shifting the paradigm from patient-centered care to patient- and family-centered care. Admittedly caregivers face vast and varying challenges, and communicating these messages will not address all their needs. Yet, these messages can empower caregivers to seek out the services and resources that do provide comprehensive support. In addition to meeting the needs of individual caregivers, ultimately these messages may collectively lead to increased caregiver demand for support services which is likely a necessary catalyst to spur system-level changes, such as enhanced supportive and palliative care services. The coming decades will see us increasingly rely on high quality care delivered by cancer family caregivers as medical tasks and the clinical setting extend into the home. For all these reasons and more, widespread support is needed from frontline providers and clinicians to help the paradigm shift. We invite you to join the cause.