Welcome to the Nursing Outlook Blog – “3 Questions” – Timely Interviews with Thought Leaders in Nursing and Health Care Policy

Although our health system has made great strides in the field of palliative care, research is still lacking to guide health providers and policy leaders toward improving patients’ experiences at end-of-life. In 2012, the National Institute of Nursing Research (NINR) hosted a summit on the state of the science of palliative and end-of-life research. A collection of 8 papers were published in the November 2012 issue ofNursing Outlook that resulted from the summit and offer a variety of perspectives from contributers and their colleagues for “next steps” in the research development of palliative and end-of-life care. These thought leaders provide us with recommendations and commentary about how we care for patients whose symptom management warrants coordination and evidence based practice. Equally important is the role of the caregivers in supporting their loved ones at end-of-life. In a review of literature by McGuire, Grant and Jumin focusing on the caregiver, it is made clear that informal caregivers are a key component of end-of-life/palliative care and are increasingly recognized as recipients of care.

In this interview, one author, Dr. Marian Grant adds commentary to the review of literature and makes clear that caregiver support is essential in caring for the patient. Dr. Grant is an active “blogger” on the Journal of Palliative Medicine social media portal and has studied the impact of online support for patients with cancer and their families.

Marian Grant RN, CRNP, DNP, University of Maryland School of Nursing in Baltimore is an Assistant Professor at the University of Maryland’s School of Nursing and works as an NP on the University of Maryland Medical Center’s Palliative Care Consult Service. She does research on nursing communication. Prior to nursing, Dr. Grant was a marketing executive with the Procter & Gamble Company. She is a member of the Journal of Palliative Medicine Social Media Portal (“Blog”) – a Journal of Palliative Medicine SoMe Initiative, founded and directed by VJ Periyakoil, MD, Director, Stanford Palliative Care Education and Training, and Senior Editor, Journal of Palliative Medicine.

Click here for the Journal of Palliative Medicine “blog”:

We invite commentary that is thoughtful and provocative! Join the online dialogue!

Veronica D. Feeg, PhD, RN, FAAN


Marion Grant, RN, CRNP, DNP

University of Maryland School of Nursing in Baltimore

Question 1. Why is evidence about caregiving and caregivers so important for palliative care?

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It’s very important for a number of reasons. The first one that comes to mind is that when we think of about the unit of care for palliative care it’s always more than just the patient. It always includes what we say are either family or caregivers. And we know that for serious illness, family and caregivers, are very involved in the whole aspect of serious illness. They are there before the illness occurs, they are there as the illness progresses, often they are part of the process of working with the medical system. And so, they have needs and they have issues above and beyond those of the patient.

We also know that patient outcomes, if you’re measuring things like quality of life or symptom management, are better when those loved ones who are providing care to them are able to do a better job of it are more comfortable, more knowledgeable, more confident in their skills. So we know the patient outcomes are better. But there’s also an evolving literature that is really kind of scary that tells us what happens to family caregivers who don’t get help through the process. We know for instance that in the intensive care area after a protracted critical illness, even if the patient survives, the family often has psychological, emotional issues, signs of PTSD, dysfunctional bereavement, and that those things can last for months beyond the hospitalizations.

As we’re thinking about trying to improve the care for those with serious illness, it wouldn’t make sense to just focus on the patient. Families are an integral part of that and for this article we defined caregivers as being those informal nonprofessional caregivers in the patient’s life. We know that that’s a term sometimes used for clinicians as well, but we really were looking at the loved ones, the family members who are providing caregiving. So that was the definition we used for this literature search.

Question 2. Can you give some more perspective on the quality of evidence to date on this topic (palliative care and caregivers)?

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So when we did this literature review, it was a little bit overwhelming, because there is a huge body of evidence about the effect of health and illness on family members or family caregivers. However for our purposes and for the NINR conference, we were really focusing in on that part of the evidence that focused on palliative care, hospice care, end of life and those aspects of it. You could say that we probably missed things that are in other aspects of the literature because the keywords wouldn’t have been categorized in the way we were searching for the evidence.

We took at look at a lot of things and we ended up with 141 articles – 109 were studies. The state of the science is very early on. It’s mostly things that we already kind of suspected for those of us who work as clinicians in this area, but there were lots of small samples, a lot of descriptive studies, a lot of [studies that] were qualitative. They did confirm what we had already observed as clinicians, which is helpful, because at least we can say that at least this phenomenon that I have witnessed is indeed a phenomenon and affects family caregivers with other illnesses or in other parts of the world. But we obviously don’t have a lot of information about: “…and then what?” What should we do next with this information? Because what we have is kind a better sense of what is going on out there, but it doesn’t really help us to know: “…so what are the kinds of interventions we should be providing to these caregivers?” It confirms our concern that yes, serious illness and end-of-life and things related to palliative care are very important and affect a lot of aspects of these caregivers’ lives and therefore affect the patient’s lives, but it doesn’t tell us exactly what we should do about that. So our sense was that this literature is in the early stages and that’s wonderful that people are kind of doing the basic building blocks but now obviously there’s the opportunity to build on that.

Question 3. What are the key next steps for future research in this area?

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So building on the fact that we’re looking at the early stages of this body of evidence, it would be wonderful to have more prospective, more longitudinal studies. A lot of the things we looked at were retrospective. They often lacked conceptual or methodological rigor. You know, I read one article that was about how in an inpatient hospice setting, they had instituted afternoon tea for families. They actually had done a little bit of study on that. And it was kind of lovely, but it leaves you with the feeling that there are a lot of little efforts going on out there – like “Hey! Let’s put on a research study!” And not necessarily being rigorous about: Do we have a conceptual framework? What is the theoretical framework?

There is not a lot of agreement yet on what the measurement aspects of these studies should be. Are we using common measures? Are we using validated tools? Are the tools measuring the right things? There certainly are validated instruments out there but we didn’t find that they were consistently used. And are we measuring the same outcomes? There’s been a lot of focus in the literature so far on the outcomes to the family caregiver but not so much necessarily on how that might affect patient outcomes, which obviously when you start thinking about funding some of these efforts is important – because the healthcare payers are not paying us to make the family caregiver’s lives better, they are hopefully paying us to make the health and the lives of the patient better.

We need more sophisticated statistical methods and I think that goes along with having better measurement tools and better measurement information. And, I would say, it would be helpful to understand more about the roles of caregivers. You know people kind of fall into this. They are part of a family unit where somebody develops a serious illness, and then it kind of is like: …Well I guess it’s you mom, who’s going to be the family caregiver here.” So what is that process? We know that in serious illness there are trajectories. Some illnesses are rather quick and the decline is pretty steady and takes place over a few months; whereas others might go on for years. If you care for a loved one who has Alzheimer’s, your role initially in that illness might be very different from how it might be in the last stages.

There’s been wonderful evidence done about bereavement affecting obviously family caregivers but going beyond that, what happens to people a year later or two years later, or five years later?

What happens to the family dynamics down the road? Are people able to overcome some of the more difficult aspects of a serious illness? I think that there are certainly many permutations of caregiving. There are disease specific aspects. So how is somebody who cares for a loved one with Alzheimer’s disease having a different caregiving experience from somebody who is caring for a loved one with cancer? What about things like long distance caregiving? Now with the Internet and with technology you have loved ones who are not physically present but who might be very much a part of the support system for a patient.

So, there is just a lot more to learn in this area and I would strongly urge anyone who has an interest in this to certainly give this consideration – because I think this would be so helpful, not just for the family members but I think it would be helpful for patients. And I think it would be helpful for people providing care for people with serious illness and their loved ones to know with more confidence that “….you know, this thing that we’re doing is really the best thing we could do for people in this situation.”