Caregivers, especially those caring for older patients with advanced cancers, are under immense stress taking care of their loved ones. Supriya G. Mohile, MD, MS, The Philip and Marilyn Wehrheim Professor at the University of Rochester, and colleagues revealed in a study that caregivers of older patients with advanced cancers experience higher levels of distress, anxiety, and depression compared with the general population. In this interview with i3 Health, Dr. Mohile shares insights regarding the effect that taking care of loved ones with advanced cancer has on caregivers. In addition, she discusses ways to combat caregiver distress, anxiety, and depression.
What are some of the biggest struggles that caregivers face in taking care of older patients with advanced cancer?
Supriya G. Mohile, MD, MS: Caregivers who are caring for older adults with cancer are often themselves older. In our study, we found that close to 70% of the caregivers were themselves spouses or live-in partners. In addition to caregiving, they have their own health care needs that they are managing, which is a big issue.
The other issues that happen are patient-related, meaning that older adults with cancer have not only the cancer but also other comorbidities or disabilities that are prevalent. Caregivers are caring for patients that have complex medical needs, which can be really difficult. In our study, about 30% of the patients had cognitive impairments, and the prevalence of cognitive impairment in older patients with cancer is underrecognized. As you can imagine, being a caregiver who is 70 years old caring for your spouse who has cognitive impairment and cancer can be really difficult.
When we asked caregivers about burden, they responded by saying that they find value in caregiving. They want to provide and be a source of support for their loved one. They themselves rarely use the word burden, but in our study, we were able to show still that caregivers had high levels of distress, depression, and anxiety over how sick the patient was. We measured these levels using geriatric assessment. The number of geriatric assessment problems which captured comorbidity and disability was associated with those adverse emotional health issues for caregivers.
What impact does caregiver distress, anxiety, and depression have on the care of their loved ones?
Dr. Mohile: I think it's a complex situation where if you have a caregiver caring for a patient and the caregiver is also distressed and has their own emotional and physical health issues, you can imagine that the patient may not be getting all of the support that he or she needs to get treatment, to go to the doctor, and to manage, and that the family's caregiver and the patients have to rely on social support networks—children, friends, and/or the community—in order to help fill in some of those needs because it can be really difficult for the two people together.
Our study didn't look at the impact on outcomes of patients due to caregiver emotional health issues. You would need a longitudinal study to look at that, and our study was cross sectional in that we collected all of the data at the same time, and we just looked at associations. However, I am a geriatric oncologist, and we take care of patients and their caregivers in the clinic who are both older, and we know that this happens. We know that when caregivers are distressed, the patient also has difficulty with accessing care and following through with complex treatment regimens. It can be so difficult that patients end up in the hospital because of challenges with caregiving at home.
I think what our study highlights are the needs, but what we need to see next is interventions that are what we call dyadic, meaning interventions that help both the patient and the caregiver because the needs are symbiotic. In other words, when one person has a problem, it affects the other person, and vice versa. So, if we're doing interventions just for the patient and neglecting the caregiver, then we're not helping either of them. We need to look at interventions that really help both the caregiver and the patient together.
What are some of the biggest challenges in dealing with caregiver distress, anxiety, and depression?
Dr. Mohile: The biggest challenge is how our health care system is set up. As oncologists and geriatricians, we are taking care of our cancer patients. We are focused on the patients' needs, whether it's symptoms, whether it's their cancer treatment, or whether it's side effects from the cancer treatment. We do look at social support, so we make sure that the patient has social support and can come back and forth to the clinic and get their treatments or call if there's an emergency. However, we rarely—or we don't do as often as we should—turn to the caregiver and say, how are you doing? What are the things we can do to help you? What is your wellbeing like? What are your sources of support? When can you get relief? What can we do to help with your caregiving? I think it's just because of the way we are billing Medicare or billing the insurance company for caring for the patient. We need to have some way that we can actually care for the caregiver, too, and we're not doing that as well because it's not built into the structure of that system.
We also know that caregivers hardly ever ask to speak and talk about themselves and their needs in the clinic visit. They're always talking about the patient and what the patient needs because that's why the patient is there, so their needs are not even discussed unless someone explicitly asks them what is going on with them and what their needs are. Sometimes our social workers in the clinic do that, but as oncologists, we should also be doing it more often.
There are a lot of support groups in hospitals that are for both patients and caregivers together, but I think we need to go beyond support; it's really tangible help that is important. Somebody who can't get to the hospital or somebody who needs to go out to the grocery store and cannot leave the patient alone, or somebody who just needs to get away for a couple days—those are the kinds of things that need to be addressed because caregiving is often a full-time job; there's no mental and physical relief unless someone has a big family or friends that are willing to step in. A lot of times in our culture, caregivers don't even ask their friends and family to step in because they are working or busy, and they just kind of take it on themselves until it's so hard that they can't do it anymore.
What can be done about caregiver distress, anxiety, and depression?
Dr. Mohile: Dyadic interventions and a shift in our health care system to really value caring for caregivers can help combat caregiver distress, anxiety, and depression.
We can develop interventions that can help both caregivers and patients. There is an intervention that has been designed that is an example of something that can be used more often. This intervention is called Enable, and it was designed by Marie Bakitas, DNSc, CRNP, NP-C, AOCN®, ACHPN, FAAN, at the University of Alabama. There are several high-impact studies showing that this intervention really helps both caregivers and patients. This nurse-driven intervention involves telephone calls over the course of four to six months, where nurses are trained to assess distress and emotional health outcomes and symptoms, both for the patient and the caregiver, and intervene when either is having distress or trouble, so it fits in collaboration with the oncology team and their clinic visits. It has been shown to improve outcomes of caregivers and patients.
However, the challenge is reimbursement. When you ask practices to train their nurses in this way and deliver these palliative care interventions concurrent with oncology care, who is going to pay for that? These are not visits; the nurses have to be trained, but the nurses in these clinics are already busy seeing patients. Where does the practice get reimbursed for putting energy into helping patients and caregivers? So there are models that exist for dyadic interventions, but our health care system reimbursement model has to change, too, so that we are providing high value care and not just a fee for service care. When we shift the value, we are trying to keep people out of the hospital, keep them less distressed, and ensure that patients and caregivers have a better quality of life.
In addition, integration of palliative care physicians and advanced practice providers into care concurrently can help. In many areas, oncologists only have access to hospice services, which are really provided at the end of life, and there is a lack of access to palliative care and geriatrics-trained health care professionals. We need to increase training for palliative care for geriatrics, so that more patients and caregivers have access to these other disciplines and that care is coordinated across oncology with these other disciplines.
What can community oncologists do to address caregivers' needs?
Dr. Mohile: Partnering with resources in the community is important. First is to assess caregiver needs, whether it's the oncologist or somebody in the practice that is assessing their needs. It could be a nurse or advanced practice provider that is capturing measures of distress for both the patient and the caregiver. Then if there are high levels of distress, they need to really ask about the caregivers' and patients' distress. Assess what the issues are with the patients that are causing that distress. In our study, we used geriatric assessment as an assessment of health status. Those measures were associated with distress. We put out guidelines to the American Society of Clinical Oncology (ASCO) that recommend doing geriatric assessment measures for all older patients getting chemotherapy. Integrating those measures into routine care could help identify why a caregiver is distressed, and then working with other resources like social workers or home care programs which often provide nursing support, physical therapy support, social work support and recognizing what those resources are, and putting patients and caregivers who are distressed in touch with those resources can really help.
For older adults, there are aging resources in many communities through elder life programs, and many times oncology practices are not aware of those resources because they are not focused on the aging component. Expanding beyond cancer and thinking about aging and palliative care can really help patients and caregivers also.
Anything else you'd like to add?
Dr. Mohile: I hope that some of the work that we and others are doing can really highlight that if we are going to provide patients with the highest level of care, we cannot neglect their caregivers and social support. We really have to have an integrative comprehensive evaluation and intervention plan for everyone who is involved: if the support system is not solid or supported, the patient will likely not do well.
About Dr. Mohile
Supriya G. Mohile, MD, MS, is the Philip and Marilyn Wehrheim Professor of Medicine and Surgery at the James Wilmot Cancer Institute at the University of Rochester and the Director of the Geriatric Oncology Research Program. Dr. Mohile is a board-certified geriatrician and oncologist with clinical expertise in treating patients with genitourinary and gastrointestinal cancers.
For More Information
Kehoe LA, Xu H, Duberstein P, et al (2019). Quality of life of caregivers of older patients with advanced cancer. J Am Geriatr Soc. [Epub ahead of print] DOI:10.1111/jgs.15862
Image Courtesy of University of Rochester Medical Center
Transcript edited for clarity. Any views expressed above are the speaker's own and do not necessarily represent the views of i3 Health.