A New Perspective on Engaging and Supporting Patients with Cancer

Dawn Holcombe, MBA, FACMPE, ACHE
President, DGH Consulting, South Windsor, CT

In addition to the ongoing COVID-19 pandemic, the oncology community has been buffeted by a cacophony of headlines and concerns regarding the cost of care, value-based performance contracts, staffing shortages, revenue cycles, clinical pathways, and competition. Entire industries, such as medical benefit managers, have sprung up to oversee providers and ensure that they are delivering only medically necessary care. Although we know that all of the things we do on a daily basis are aimed at improving the lives of patients, this extraneous noise can be distracting and disconcerting.

Fortunately, even in a world of chaos, we may come across something special that makes us pause, catch our breath, and rethink what is in front of us. In one of those shining moments, I had the privilege of reading a new book titled Between Life and Death: From Despair to Hope by Kashyap Patel, MD, CEO and Managing Partner of Carolina Blood and Cancer Care, Rock Hill, SC (see my interview with Dr Patel).

The concept for the book was clear and seemingly quite simple. Dr Patel wanted to tell the story of one of his patients who was facing a terminal cancer diagnosis and share how this individual, and others like him, faced life in the context of a new reality. However, as I read through the book, I began to see the potential impact of these patients’ stories, and the book’s question “What does it mean to die well?” (as well as the corollary question not addressed in the book “What does it mean to live well with cancer?”) on the oncology community at large, especially in light of the demands that we all face in 2020 and beyond.

How Does Palliative Care Fit into the Cancer Care Continuum?

Palliative care is an important component of end-of-life care, but the role of palliative support in helping patients to make informed decisions is equally important at any point in the cancer care continuum. I recently finished updating a white paper on the role of palliative care in oncology aimed at managed care medical directors, with the goal of informing their policy and strategy decisions. Palliative care has a rich history of improving outcomes and patient satisfaction, and reducing costs for society as a whole. However, the formal integration of a palliative care culture and mindset is still elusive across payers and providers, and the question of its scope and timing in the cancer care continuum remains variable.

We talk about engaging patients in medical decision-making as part of the palliative care continuum, in early diagnosis and treatment selection as well as in advanced care planning and end-of-life decisions. But are we actually listening to patients and helping them become proactively engaged in the management of their disease? What do we need to change in practice operations and payer contracts to recognize the quality of life, outcomes, and cost reductions that may be achieved by better informing patients so they can make choices that might differ from traditional treatment options, especially in the setting of more advanced, later-stage cancer?

The Impact of Meaningful Conversations with Patients

I found the physician–patient interactions in Dr Patel’s book very enlightening. Are we taking the time for these conversations with patients? And are we having honest discussions with payers and employers about the potential impact of these conversations on decisions related to practice management, value-based performance management, employer benefit design, medical services, and the perceived value of treatment choices? Are we considering the influence that these conversations may have on messages for the public—and for our providers, teams, and payers—regarding available treatments?

Questions for Informed Patient Decision-Making

The underlying premise of value-based contracting and innovative care is that our practices and physicians are working with patients, families, and those who are paying for the services to make the most “correct” decisions regarding cancer care. Yet our insurance benefit designs, our patient scheduling systems, many of our operational processes, and even our approach to clinical trials and discussions of treatment alternatives may not facilitate 2 critical questions that can greatly affect patient decisions, namely, “What does it mean to live well with cancer”? and “What does it mean to die well”?

The questions of living well and dying well are surrounded by constantly shifting clouds of distinction, such as quality of life, workplace productivity and presenteeism, a patient’s support system, accessibility, cost versus benefits (from diverse perspectives), cultural beliefs, and many other variables. Since these are decisions unique to each person, it would be difficult for a practice to adopt a single solution. However, practices that embrace these 2 questions for each one of their patients are likely to produce outcomes and patient satisfaction that will stand out in comparison with other practices.

Dr Patel on Dying Well

In Between Life and Death: From Despair to Hope, the patient with terminal cancer asks Dr Patel for assistance in facing the choices he must make. He says, “You enter your patients’ lives, become part of their world. We hand over our lives to you and give you permission to inject poisonous chemicals into us that can even potentially kill us before the cancer does. Will you help me in making this transition into my new life easier for my family, so memories of my last days aren’t painful for them, but something they can cherish?”

Dr Patel proceeds to share some of the common patient experiences he has encountered over several decades of oncology practice, as well as many of the real-life questions he has been asked, including the following:

  • Will my passing be full of pain and agony?
  • What will happen to my body in the last days?
  • Will I be in control?
  • Will I be in a coma?
  • Will I die a good death?

These are questions that insurers and employers do not typically consider when it comes to medical necessity or benefit determination. However, these are the questions that can help patients make conscious decisions about their options for a good life with cancer (with treatment or without) and/or a good death when the time comes.

Preparation Is Key

The key to navigating the choppy waters of value-based contracting, population management, and even risk management may be the ability to help patients prepare for the reality of a life with cancer. This includes helping them prepare for the realities of paying for various treatment options, coping with side effects, rising from their beds each day so they can accomplish the tasks of their everyday lives, and managing their disease for as long as they can in the midst of their current circumstances. And, when the time comes, helping them prepare for their exit from this world.

Payers and employers are exploring vendors and programs that focus on using carrots and sticks to encourage physicians to choose treatments wisely, to identify and remove unnecessary, low-value care, or to follow clinical pathways set by external entities. Practices that transform their cultures to prepare patients for the hope that treatment—or the decision to not undergo treatment—can bring, as well as the reality of the physical, emotional, spiritual, and financial costs of their choices, will have mastered the ability to guide their patients to the right decisions at the right time.

Dr Patel’s book has the potential to open the door to a different level of patient support and engagement that can lead to high-quality, efficient cancer care. Employers and health plans will always be concerned about treatment costs, but honest conversations can lead the way to realistic expectations, which in turn can lead to practices having better success on many levels.

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