Supporting the Unsung Heroes: Clinician's Guide to Easing Caregiver Distress

Every palliative care clinician has encountered a caregiver with tension written all over their face, or fatigue present in the stoop of their shoulders.

Caregivers, especially informal caregivers (e.g., family caregivers) are the unsung heroes of health care. They are asked, or expected by default, to provide ongoing care for their loved ones, including spouses, children, parents, or others, all while managing their own lives.

That said, palliative care clinicians are in a unique position to help. They often see the patient’s loved one every step of the way. The sister who is missing work to hold a scared hand in the waiting room, or the mother exhausted from juggling her family’s needs and her husband’s chronic symptoms which have landed him in the ED time after time. Given the trust that develops between the clinician, patient, and their loved one, caregivers are likely to welcome help alleviating some of this distress.

Caregiving can be a very meaningful experience, but the associated stress can take a toll on one’s physical and emotional health.

Research has documented the emotional, physical, and financial demands of this labor. Additionally, we know that caregivers routinely neglect their own health needs when helping their loved ones, with fifty-three percent of caregivers reporting that “a decline in their health compromises their ability to provide care,” according to the Centers for Disease Control and Prevention (CDC). They are at increased risk of having multiple chronic diseases, which further compromises their ability to provide care. Also, as the general population ages, more people can be expected to be called into service as a caregiver.

It’s also important for palliative care team members to be aware that the burden can be higher for some caregivers, too. For example, the results of a 2017 systematic review published in Cancer Nursing detailed a high burden among caregivers of elderly patients with cancer. The researchers found that the burden was higher among younger caregivers, those of people with solid tumors, and those who had to provide assistance with their loved one’s activities of daily living. Other research confirms that the caregiving experience can vary based on the patient’s specific illness, due to the associated intensity and duration of the caregiving.

So, you may be wondering how to go about the assessment. The first step is to informally assess caregivers for possible distress. It won’t always be immediately evident, which gives further incentive to do a little gentle probing.

For example, I look for the opportunity to ask some simple, casual, open-ended questions, such as “how are you holding up these days?” By asking this, I’m opening a door. The patient is so often the sole focus of the conversation that it’s easy to forget about the caregiver’s needs. In asking them directly how they’re doing, it conveys that I’m interested in their well-being, too. I’m giving them the space to share any problems or distress that they’re experiencing.

Assessment should not be viewed as a “one and done” event. Experts often recommend reassessing caregivers regularly, especially at times of transition, major treatment decisions, or acute changes in overall condition.

However, I don’t wait for a change to occur in the patient’s status. Anytime that I interact with a caregiver, whether it’s in person or over the phone, I try to ask about their own health and well-being. Ultimately, asking takes just a few seconds, but it lets the caregiver know that they are not alone. It can create the opening for a conversation they may not even realize they need. Regularly checking in gives them the opportunity to change their response if they downplayed their feelings of distress or anxiety in the past.

Beyond the informal questions, you may gain more insight into any distress that your patients’ caregivers are experiencing by using an assessment tool, such as the Distress Thermometer, created by the National Comprehensive Cancer Network (NCCN).

This specific tool provides an illustration of a bulb thermometer, with markings that range from 0 at the bottom (no distress) to 10 at the top (extreme distress). Caregivers are asked to circle a number on the thermometer to describe their level of distress over the past week. There is also a checklist of potential concerns that a caregiver can tick off.

● Caregiver Self-Assessment Questionnaire (CSAQ), a caregiver self-assessment questionnaire created by the American Medical Association (AMA).

● Zarit Burden Interview (ZBI), a 22-item self-report measure that also includes several shorter screening tools. The longer version is for a more in-depth screening, vs. the shorter version for expediency. Caregivers are asked to rate their reaction to a series of statements on a scale of 0 (Never) to 4 (Nearly Always).

● Carer Support Needs Assessment Tool (CSNAT), a 14-question survey developed to make caregivers’ needs more visible and identify the domains for their specific concerns.

● Depending on their loved one’s serious illness, there are specific assessment tools. For instance, the REACH II Risk Appraisal (RAM) screens caregivers of loved ones with dementia. For lung disease, the SUPPORT intervention, which stands for S-Symptom Management, U-Understanding the Disease, P-Pulmonary Rehabilitation, P-Palliative Care, O-Oxygen Therapy, R-Research Considerations, and T-Transplantation, addresses idiopathic pulmonary fibrosis.

Once you identify distress through an assessment tool or through informal conversation or visual cues, you can address it. Some strategies to try:

Try asking, “How can we help you?” or “What can I do today to help you?” This is a good opportunity to remind your patients' caregivers that their own health and well-being are important, too. If they become sick or overwhelmed, they won’t be able to care for their loved ones.

Collaboration with other team members, such as chaplains or social workers, may yield more caregiver support and resources. If your team doesn’t have these roles, there may be community-level support you can turn to.

Look for resources that are specific to their community, their family situation, and the patient’s health condition. For example, the Alzheimer’s Association offers tailored support and resources about caregiving, connecting caregivers to their local chapters for local support. ARCHANGELS allows caregivers to assess the intensity of their caregiving burden, and find resources in their community to help them. GetPalliativeCare.org provides detailed information to patients and caregivers, specific to serious illness(es). You can also refer patients to national organizations, like the National Cancer Institute, and the Family Caregiver Alliance. The health care team should do the work, instead of the caregiver who is already experiencing distress.

Build up your own library of resources for referrals over time. You might even ask your patients and their caregivers if they’ve found any local resources that have helped them so you can recommend those to others in the future.

Essentially, if you are alert to signs of distress in your patients’ caregivers, you’ll be better prepared to help them find the help they need. It’s best not to assume. Even if they don’t show outward signs of distress, they may be struggling. Use your best judgment to inquire and assess them for distress or burnout, and connect them with resources that will support them in their endeavor to care for themselves, and their loved ones.

Edited by Melissa Baron. Clinical review by Andrew Esch, MD, MBA.