Q&A with Harvey Max Chochinov: Intensive Caring for Intensive Suffering

Devon Phillips (DP): The title of your talk is 鈥�Dignity, Personhood and Intensive Suffering: New Insights into Patient Suffering.鈥� Can you tell me about these concepts and how you will speak to them in your upcoming presentation?听

Harvey Max Chochinov (HMC): I have been doing palliative care and palliative care research for several decades. We began our research trying to understand what undermines a person鈥檚 wish to go on living as they approach death. That segued into a large research program on the issue of dignity, how we understand it, and how we make it something tangible and real at the bedside. That gave us a number of insights into what I have coined 鈥�dignity-conserving care.鈥� Along the way, we have learned a great deal about the importance of personhood and how a sense of no longer feeling like the person you once were can undermine a sense of self, a fracturing of 辞苍别鈥檚 core sense of identity.听

This reminds me of the work of , who said, 鈥渊辞耻 matter because you are you and you matter until the end of your life.鈥� As I thought about that, I wondered, 鈥�do we have an approach for people who feel they no longer matter?鈥� Often, when we are dealing with a problem that seems beyond the reach of being fixable, we retreat and feel helpless. 罢丑补迟鈥檚 why I introduced an approach coined 鈥�intensive caring.鈥�听

DP: Tell me about what comprises 鈥渋ntensive caring.鈥�听

HMC: Intensive caring is the kind of care that we need to invoke for people who feel that they no longer matter, who feel there is no real meaning or purpose in living. The core tenants of intensive caring include first,听the issue of abandonment and the commitment to being with patients. Second, intensive caring reminds us about the importance of personhood and taking an interest in who a person is and how we can place this on our clinical radar. Third, intensive caring is mindful of tone of care and what sets that tone, apart from anything we do or say. The fourth tenant of intensive caring has to do with knowing what is still possible, even within a limited time frame or when death is imminent. The last tenant of intensive caring is therapeutic humility, and why that is vital if we are going to work and thrive in a clinical environment where cure often resides beyond our grasp.听听

DP: When you talk about the tone of care, does this apply to families and caregivers as well as healthcare professionals?听

HMC: Absolutely. Two years ago, I published an article in the 听called 听and then within a year of that, I published a second article in the Journal of Palliative Medicine entitled ,听outlining to families what can be done so they feel that what they are doing is making a difference. These ideas are meant not only to shed light on what this means from an academic or research perspective, but how we can change and improve the way we care for patients and families.听

DP: 罢丑补迟鈥檚 very interesting, because people who are seriously ill may feel that they have lost the essence of who they are. They may not recognize themselves, and it is important for families and healthcare professionals as well to be able to support patients.听

HMC: To underscore what you are saying, these ideas align under the notion of disintegration, which is a term that used when he talked about the nature of suffering. During my lecture, I hope to follow another thread emerging from our work on desire for death in the terminally ill, which implicates personhood. A profound existential issue that patients face is no longer feeling like the person they once were.听听

To come full circle, very recently, we published a study led by colleagues in the department of psychiatry that used an instrument we developed called the . That study applied it not to palliative care patients, but to patients who were receiving inpatient psychiatric care. They reported a profound connection between a lost sense of dignity, suicidality and suicide attempts.听听

I have spent my career studying the way life looks when you are standing at the very end. It turns out that what you see applies across the entirety of life. Feeling like you are longer who you are, feeling broken, feeling a loss of dignity and not wanting to live; those 补谤别苍鈥檛 just relevant near the end of life, but across the entirety of it.听听

DP: Looking to the future, what would you like to see moving forward in palliative care?听听

HMC: We tend to get preoccupied with the transactional components of medicine. My work points to the fact that the relational aspects of medicine are as critical as the transactional elements. What a person has and who a person is are not mutually exclusive. My hope is to continue to do work that underscores that reality; that the transactional and the relational must go hand in hand. Failure to do so is a disservice to patients and families and falls short of being the kind of healthcare professionals we should aspire to be.听