Dame Cicely Saunders, the founder of the modern hospice movement and palliative care, famously said, “You matter because you are you, and you matter to the last moment of your life.” This quote has become the central philosophical tenet of palliative care. It implores us to remind patients, who may be feeling helpless, hopeless, or worthless, that they matter. There is abundant evidence that patients approaching death are susceptible to feeling they no longer matter. When patients feel life is no longer worth living, health care professionals must affirm their intrinsic worth for all that they are, all that they were, and all that they will become in the collective memories of those they will eventually leave behind.
“Intensive caring” incorporates various empirically derived components that collectively describe a way of being with patients who have lost hope, who have lost any sense of meaning or purpose, and who ultimately feel they no longer matter. These feelings have consistently been reported as a driver of the desire for death, loss of the will to live, and interest in physician-hastened death. From the patient’s perspective, death offers a way to relieve the burden they sense they have become, while ending a life they feel no longer matters.
Intensive caring requires finding ways to remind patients that they still matter. A foundational element of this approach is nonabandonment, which demands committed, ongoing care and caring, even when patients no longer care about themselves. Absent someone who cares, suffering, like cancer, can grow, spread, and even kill. Studies have shown that when patients feel abandoned and bereft of care, they are more likely to contemplate or die by suicide. Our studies on the desire for death in the terminally ill found that those who desire death report lower family support relative to those who don’t. Hence, the assurance of continued caring and support is a vital component of helping patients feel they matter.
Another component of intensive caring is taking a keen interest in who the patient is as a person. Our studies of the Patient Dignity Question (PDQ), which asks, “What do I need to know about you as a person to give you the best care possible?” help patients feel they are seen as whole persons, rather than the embodiment of their disease or disability.
Intensive caring sees health care professionals hold or contain hope when patients can no longer do so themselves. This means expanding one’s therapeutic imagination to include the possibility that patients may find psychological, spiritual, and physical comfort, tolerable suffering, and for those near the end, a peaceful death. Toward the end of life, hope tends to conflate with meaning and purpose and may be nurtured through connections to those who, or things that, matter.
Intensive caring requires a tone of care that is dignity-affirming. We have studied this tone, which we labeled “therapeutic presence.” The latter comprises being compassionate and empathic, being respectful and nonjudgmental, being genuine and authentic, being trustworthy, being fully present, valuing the intrinsic worth of the patient, being mindful of boundaries, and being emotionally resilient.
Intensive caring requires therapeutic humility. The standard medical paradigm—examine, diagnose, and fix—is empowering but within the realm of human suffering, some problems simply defy repair. Therapeutic humility means relinquishing the need to fix, along with tolerating clinical ambiguity, accepting and honoring the patient as the expert, and trusting in the process.
Intensive caring, the therapeutic derivative of Dame Cicely’s “You matter because you are you,” provides a way of being with patients who have come to believe their lives are no longer of any consequence. Just as intensive care was designed to address the needs of patients with severe and life-threatening conditions, intensive caring offers a way for all health care professionals to be with patients confronting the enormity of human suffering. Intensive caring provides an opportunity to target achievable goals, focused on a myriad of ways to affirm that patients matter. While cross-cultural resonance of intensive caring remains to be seen, the notion of personhood and the need to feel one matters is universal and speaks to the essence of what it is to be human. Decades later, when medicine’s reach to fix exceeds its grasp, the time to consider the role of intensive caring is now.
Harvey Max Chochinov is a psychiatrist.
