What is palliative care, and what are misconceptions surrounding this type of work?
Palliative care is about helping people with serious illness and their families live the best they can. Many people think of palliative care as end-of-life care or hospice. While palliative care can include hospice, it’s not the whole picture. As a palliative care specialist, I see people both in the hospital and in outpatient settings. Some patients I see may be nearing the end of life, but others may live for years.
One common misconception is that palliative care is only about dying. In reality, it’s whole-person care that also focuses on family and friends. We try to meet people where they are and address their needs at the time – whether that’s managing symptoms, helping with decision-making, supporting practical or logistical needs, or connecting them to community services.
Another key point is that palliative care is multidisciplinary. As a doctor, I work closely with nurses, social workers and occasionally pharmacists, as well as other therapists – music, art, physical, occupational, nutrition, speech therapy and more.
What does it mean to experience heart failure?
Heart failure is a syndrome in which the heart, for a variety of reasons, isn’t pumping enough blood to meet the body’s needs. People with heart failure often experience symptoms such as fatigue, shortness of breath, swelling in the legs, changes in mood and changes in physical and cognitive function. The causes can vary – some people develop heart failure after a heart attack, others due to high blood pressure, diabetes or other conditions. Despite the different causes, the symptoms are often similar. It’s a serious illness, in many cases as serious as some types of cancer.
"Caregiving is deeply relational. Interestingly, it wasn’t changes in depression or burden that predicted whether caregivers found benefit in their experience. What mattered was whether the relationship itself felt better or worse over the course of a year. So, love and connection matter as much as – or maybe more than – the tasks involved in caregiving." – David Bekelman, MD, MPH
What kind of care do people with heart failure need?
Ideally, multidisciplinary care, as heart failure affects the body, mind and spirit. Much of the focus in the medical setting is still on medical care, such as medications, medical devices and surgery. Which is great – much progress has been made to extend survival of those who have heart failure. However, many with heart failure remain symptomatic and limited. So, people need help adjusting to these limitations and changes in their life. This may include help from peers, friends, social workers, nutritionists and physical therapists, as well as psychological and spiritual support.
What type of care do people with heart failure need at home?
Family caregivers and those who provide informal healthcare are essential. We have more than 23 million people living with heart failure worldwide who receive daily, unpaid support from a family member or friend. It's common, and the tasks vary widely. Some of it is helping patients get to medical appointments or helping with medications, as people with heart failure on average take seven medications. Caregivers also help with diet – many people with heart failure are on restricted, low-salt diets. Some of it is caring for the symptoms. As the illness gets more advanced, people have a lot of fatigue, and they are short of breath. It can be shocking for people taking care of a loved one to see them gasping for air or having no energy to move around. It’s a lot of work, and it’s a lot emotionally as well.
You recently conducted two studies – both in the context of a randomized clinical trial – about caregiving and heart failure. What did you learn?
These two studies provided new insights into caregiving in the context of heart failure.
In the randomized clinical trial, we looked at whether a team approach also benefited caregivers. We studied 100 people with heart failure and their caregivers to determine if the Collaborative Care to Alleviate Symptoms and Adjust to Illness (CASA) program helped caregivers. We also examined how the burden of caregiving changed over time and what factors influenced that burden.
We learned three things. First, caregivers for people with heart failure juggle a lot. They often report burden and depression, and sometimes they don’t have time to care for themselves. However, some caregivers find meaning and growth in the experience.
Second, caregiving is deeply relational. Interestingly, it wasn’t changes in depression or burden that predicted whether caregivers found benefit in their experience. What mattered was whether the relationship itself felt better or worse over the course of a year. So, love and connection matter as much as – or maybe more than – the tasks involved in caregiving.
Third, while patients showed improvements in areas like depression and fatigue with the CASA program, there were no changes in caregiver depression, burden or benefit finding. We tried to understand why and learned that caregivers have diverse needs – some of which may not improve just because the patient improves.
So overall, caregivers for people with heart failure need programs that address their own needs, not just the patient’s.
How can we better support caregivers?
There are a few concrete next steps. First, we need to fund research to identify programs that truly help heart failure caregivers. Second, we need to tailor support to the individual needs of caregivers. That means talking with them, understanding their challenges and designing support that fits those needs.
Third, specific to heart failure, it would be ideal to build caregiver services directly into heart failure care. There’s a model like this in some cancer centers, but as far as I know, there are few if any programs that systematically integrate caregiver services into heart failure care.
Are there other examples of how you might support a caregiver in that space?
We’re lucky to have a psychologist on the team. Our psychologist works with caregivers on coping with the burden of caregiving and along with our social worker, helps connect them to resources in the community that can support their loved one’s care.
Many of the resources for caregivers are more geared toward people with dementia – things like respite care, home equipment or occasional home health and nursing assistance. In the heart failure space, we don’t have many structured resources like this, so it’s an area of need.
You are part of a team that received a $64 million grant to establish a palliative care research consortium. What would you like to see happen with this?
Since I study heart and lung illnesses, I’d love to see more funding for research to help us figure out how to identify caregivers with the greatest needs, knowing it’s not always about healthcare – many needs are social or community-based.
Ideally, we could give caregivers a “menu” of what support might look like in the future, how to access it and ways they can coordinate with family and friends without relying entirely on the healthcare system. Peer support programs – caregivers helping other caregivers – would be another amazing resource.
That said, one thing we know from this research and others is that caregivers are incredibly busy. They often don’t even have time to take care of themselves or their own health. That makes it hard to involve them in research – they’re just trying to keep their heads above water while providing care to their loved ones.
CU School of Medicine Receives $64 Million NIH Award to Establish Palliative Care Research Consortium
What do you hope to see happen in the next 10 years?
A routine practice of identifying caregivers, checking in on their well-being and offering tailored support. A roadmap could help caregivers understand what lies ahead, support their loved one and care for themselves – allowing them to manage better and sometimes even thrive. Strengthening caregiver-patient relationships should also become standard, with referrals to resources that can ease the challenges of caregiving.
