Cancer patients need more than good health care: they need health caring, according to palliative care specialist Harvey M. Chochinov, MD, PhD, Distinguished Professor of Psychiatry at the University of Manitoba and Director of the Manitoba Palliative Care Research Unit, CancerCare Manitoba.
Health care pertains to cognition, knowledge, technical procedures, and prowess, whereas health caring pertains to things that are going to cause patient satisfaction or dissatisfaction, explained Dr. Chochinov during the Plenary Session at the 2014 Multinational Association of Supportive Care in Cancer/International Society of Oral Oncology (MASCC/ISOO) Symposium, held recently in Miami.
“We have a system designed to provide health care as distinct from a system that is about health caring,” he said. “Like our patients, we need to see ourselves as vulnerable.... There is very little that separates us from our patients other than time and luck…. And if we can see ourselves in that way, we are more likely to be able to practice caring and compassionate medicine,” he suggested.
The idea of health caring is the gateway to disclosure. When patients feel that caring is present and that they matter as a whole person, they’re much more likely to be forthcoming with their physicians. This disclosure leads to greater honesty and a greater likelihood that treatment plans will be consistent with patients’ goals of care, he said.
The Dignity Model
Dr. Chochinov and colleagues published a study in 2006 that examined dignity in the terminally ill in a population of 211 patients with end-stage cancer and less than a 6-month life expectancy.1 Patients were given a list of variables and asked which issues would have an influence on their sense of dignity. For nearly 75%, “no longer feeling like who you were” was found to be a profound dignity-related and existential issue.
“The psychology of illness is the psychology of loss,” he explained. “When you’re a little ill, you encounter inconvenience or annoyance. When you’re very ill, you start to lose your sense of self, your sense of person. There’s a notion of no longer feeling like who you were.”
Other important issues cited by patients and associated with sense of dignity were “feeling a burden to others” and “not being treated with respect or understanding.”
Respect and Understanding
“We need to think of ourselves as people who are in a position to provide affirmation. That’s not a word frequently used in health care, but it’s an important word,” he emphasized.
“The irony is that we spend our entire professional lives studying how to look after patients, when the reality is that no one wants to feel like just a patient,” he said. The issue of affirmation is the ability to see patients as whole human beings. The notion of respect is something that clinicians can provide or withhold, he added.
Ten years ago, in an article titled “Dignity and the Eye of the Beholder,” Dr. Chochinov explored the notion of how patients perceive themselves as seen by others.2 He asserted that patients figuratively look into the eyes of health-care providers for a reflection that will either affirm or disaffirm their sense of person.
“If they only see their illness, they feel that they have been reduced to their ailment and nothing else has registered. On the other hand, if they see that the reflection in the eye of the beholder is one that contains a picture of the entire person—not just the patient—they feel affirmed,” he suggested.
Patient Dignity Question
Seeing patients in a way that affirms their dignity and personhood is of utmost importance. According to Dr. Chochinov, the easiest and most straightforward way to put personhood on the clinical radar is to ask patients, “What should I know about you as a person to help me take the best care of you that I can?” Dr. Chochinov and colleagues coined this the Patient Dignity Question, or PDQ, due to the positive correlation between affirming personhood and preserving dignity.
Dr. Chochinov and colleagues examined the importance and significance of this question to patients, family members, and health-care providers in a study.3 They found that nearly all patients wanted their answers to the Patient Dignity Question to be included on their charts, and in many cases they wanted copies for themselves or family members. Nearly all participants felt their answers had been accurately represented, deemed this information important for health-care providers, thought this information could affect their health care, and would recommend use of the Patient Dignity Question for other patients and families.
When health-care providers were asked about the influence of the information gathered from the Patient Dignity Question, the vast majority said they had learned something new about their patients. Over half said they were emotionally affected by the information and felt it had changed their attitude. The majority said it had influenced their care or sense of respect, empathy, and their sense of connectedness with that individual.
In general, female practitioners were more likely to be responsive to issues surrounding personhood than their male counterparts. Additionally, health-care providers with the most experience were most likely to be open to issues of personhood, followed by those with no experience at all.
“This is likely due to the fact that those with the most experience know the importance of personhood,” Dr. Chochinov suggested, “and those with no experience—students—had the humility to know how little they actually knew.” ■
Disclosure: Dr. Chochinov reported no potential conflicts of interest.
References
1. Chochinov HM, Krisjanson LJ, Hack TF, et al: Dignity in the terminally ill: Revisited. J Palliat Med 9:666-672, 2006.
2. Chochinov HM: Dignity and the eye of the beholder. J Clin Oncol 22:1336-1340, 2004.
3. Chochinov HM, McClement S, Hack T, et al: Eliciting personhood within clinical practice: Effects on patients, families and healthcare providers. Under review.
