Care for people with cancer must extend beyond treatment considerations to include the physical and psychosocial effects experienced by the patient. Addressing the psychosocial sequelae of the diagnosis and associated treatment requires specialized training, emotional intelligence and compassion. Compassion has been defined as the ability to respond in ways that seeks to address the suffering and needs of a person through relational understanding and action. Dr. Shane Sinclair is an Associate Professor and Director of the Compassion Research Lab in the Faculty of Nursing at the University of Calgary, in Alberta, Canada, and sets the stage in this newsletter for the importance of compassion in the supportive care of patients with cancer.
Fred Ashbury (FA): We know that a diagnosis of cancer and the associated treatments can generate a great deal of fear and uncertainty for people. As such, we think about several skills and supports cancer patients will need throughout their journey. Certainly, compassion from those connected to the patient and involved in this journey is one of those skills. What is meant by compassion in supportive care and why has compassion emerged as an important area for clinical expertise?
Shane Sinclair (SS): In terms of clinical practice, it means that healthcare providers need to acknowledge a patient’s suffering, and I’m talking about multifactorial suffering, as suffering is not just limited to physical pain-suffering happens to the whole person. So, compassion involves an acknowledgement of the suffering of an other person, a willingness to address that suffering and the patient’s unique needs by trying to relate to them as a fellow human being. And not just by relating to them in a traditional clinical physician patient relationship, that’s important, we’re not trying to negate that, but patients told us, compassion goes beyond that. It’s about relating to the patient as a fellow human. It’s trying to put ourselves in the person’s shoes first, and engaging the vulnerability that comes along with that.
Then obviously the next important piece is trying to understand what it’s like for them to be in their shoes and what their unique needs are—not simply what we think they would need or what we would need if we were in their situation, because what they need is often different than what we would need if we were in their shoes.
Finally, and this is one of the distinguishing features of compassion, is that you actually need to care enough to do something about their suffering. So, it’s not just about hearing and to being empathetic, but actually doing something both within our scope of practice, but also outside.
For example, in scope compassion is doing regular, routine care in a compassionate manner, but patients told us that the truly compassionate physicians are the ones that go and get me a warm blanket or the one who sits down and spend extra time with me. It’s not billable, it’s not a part of their job description, but they’re doing it anyways.
FA: What are the benefits of compassion in supportive care for patients, clinicians, and the practice?
SS: To answer that question it might be helpful to start with what happens when compassion is lacking from healthcare. This stems from a number of national surveys in the US and national health reports
out of the UK, that were conducted in response to systemic failures across the healthcare system where patients in certain hospitals were being neglected, had lower satisfaction scores, lower quality care ratings, higher patient safety incidents poorer health outcomes, than in similar hospitals. What those reports discovered was that one of the greatest contributors to each of these systemic issues was actually a lack of compassion within the institution that patients were being cared for.
Here in the US, we know that when compassion is lacking at an individual practice level, malpractice suits are more likely for physicians, patients are more likely to lodge patient complaints, and there are some poorer patient health outcomes like psychosocial distress, depression, and anxiety as a result.
Now the benefits of compassion are the opposite of those things. The Beryl institute for example conduct a recent report on the patient experience in US hospitals that showed one of
the greatest predictors of the entire patient experience is the human connection that people have within the healthcare system. So, things like the warmth of their physician, being treated with kindness by administrative staff, being spoken to with respect from their nurses, these sorts of fuzzy concepts were the most important aspects of the patient experience, and they are all things that are subsumed under the umbrella of compassion.
So, in short, compassion is one of the greatest predictors, according to patients themselves, of the patient experience—I don’t know about you, but I tend to think that patients actually have some important things to say about the patient experience.
FA: What key performance measures would you recommend are needed to know the impact of compassion on the patient’s experience?
SS: One example would be the patient reported compassion measure that our team developed. We developed the Sinclair Compassion Questionnaire, the SCQ, in a way that it is not only the gold standard research measure, but in way that it could be adapted to different care settings, as a routine clinical measure.
We see this as something that teams can utilize in real time clinical care on a routine basis with their patients, giving them a snapshot of that patients experience of compassion from last week, for example, in comparison the current week. As a result, they can analyze the results and say, ‘We sort of dipped a bit when it comes to seeing things from this patient’s perspective’ for example, ‘let’s go back and have a conversation with them about what happened. So, this specific measure is intended to be used in clinical practice, but it also is primarily for research.
It can also be used at a system level to act as a benchmark, or to indicate how one hospital or clinic is doing in comparison to another hospital or unit, in terms of a total aggregated monthly or annual compassion scores for all their patients. In having this info a healthcare leader, can then go back and assess, support, and hopefully improve compassion at those particular care settings over time.
So, we are excited about working with healthcare organizations and clinical settings in embedding the SCQ as a routine clinical and system measure, and then also holding organizations and healthcare teams accountable by reporting it and making it available to patients and families, helping them in determining, for example, which long term care home they would like to place their loved one in.
FA: In many jurisdictions, including the US, the majority of cancer patients are seen in the community oncology practice setting. Many of these practices don’t have access to psychosocial and other resources to support this fundamental area of need. What skills and resources do you recommend community-based oncology professionals need to provide compassionate support for cancer patients?
SS: There’s six things I would list.
The first would be as you enter that patient’s room, or that clinical encounter, to acknowledge the multifactorial suffering the patient is experiencing, the second would be to respond in a virtuous manner which means intentionally using our good qualities for the benefit of the patient, the third is to relate to the patient as a fellow human being, the fourth is to seek to understand who the patient is as a person and why their unique needs. Fifth is to embed this knowledge in your clinical practice so that when you’re communicating with the patient in future visits, when you’re in the room with them providing clinical communication for example, to weave these aspects of their personhood and compassionate behaviors into your future visits. Finally, and most importantly, is action, to actually do something to alleviate their suffering.
I think this is where it gets a little bit tricky because, by virtue of being in healthcare, we are providing care. We are treating, we are providing interventions and so that’s where I think it’s helpful to think of compassion as augmenting and taking routine care to a whole new level—or what we refer to as out-of-scope compassion. So, if a person is in pain, for example, we give them their pain medication. That’s obviously something that we do but in terms of in-scope compassion, particularly when we do so in a proactive and anticipatory manner. So, using pain, as an example, compassionate clinicians are those who look down the road and say: “This person is probably going to get into a pain crisis, and I’m going to anticipate that and not just wait for them to call the nursing station when they are writhing in pain, I’m going to check in on them in a preventive manner—that is the compassionate piece.