By Brad Stuart

The Centers for Medicare & Medicaid Services (CMS) has announced a new Primary Care First initiative containing a novel payment track for care of the seriously ill population (SIP): Participating primary care practices will be responsible for helping attributed SIP members transition from curative treatment to excellent end-of-life care. These payments will require many clinicians to learn a different set of skills: managing their patients’ hopes.

The Evolution of Hope

Clinicians often withhold information about disease progression and prognosis for fear of destroying their patients’ hopes. This fear stems from a lack of knowledge about the nature and dynamics of hope in serious illness. Hope is not a monolithic entity that lives or dies with the prospects for cure or recovery, but rather a process that unfolds as illness progresses — whether or not treatment is successful.

Seriously ill patients typically experience two distinct phases of hope as their illnesses progress. First, focused hope supports them through the rigors of treatment as they concentrate on the outward, tangible goals of cure or recovery. But if treatment becomes ineffective — which is inevitable in chronic illness — then focused hope must be released or it degenerates into the kind of false hope that can lead to overtreatment, particularly unwanted hospitalizations.

But letting go of focused hope is painful. When people learn their illness is incurable, they typically experience grief. This is usually transient — if it’s unduly prolonged, assessment for complicated grief or even depression may be indicated. Releasing focused hope is important, however, because this makes room for intrinsic hope, centered on more subjective goals like quality of life or a search for meaning. Intrinsic hope is an inborn trait, although its development may be inhibited by denial, early-life emotional trauma — or pressure from clinicians who press further treatment on patients who might prefer comfort care instead but are never asked.

A Different Kind of Management

Managing hope is different from managing treatment, when clinicians intervene according to guidelines and protocols and judge success or failure by objective physiological metrics. This approach backfires when clinicians apply it to the evolution of hope.

Patients and families facing the end of life are emotionally vulnerable. Setting expectations and making judgments can place additional burdens on people confronting death, and it fosters distrust. Even well-meaning statements like, “You will be OK” can upset people who, upon receiving bad news, are certain things will not be OK. It’s more compassionate — and more effective — to be unconditionally present and to help patients’ hopes evolve in a gentle and compassionate way.

Managing hope is like coaching a person who has great potential but whose outlook and disposition have been harmed by an abusive, tyrannical boss. This is just the sort of psychological damage that incurable illness can cause — and, ironically, modern medical treatment can foster it too. When they undergo hospital treatment for serious illness, formerly functional people may begin behaving like hostages of a terrorist group — a state not conducive to the growth of intrinsic hope.

Managing hope requires important qualities of clinicians — qualities that aren’t usually emphasized in traditional medical training. These include deep empathy, the ability to reframe clinical setbacks, patience in the face of denial, compassion in the face of profound suffering, and the mental and emotional clarity to see through despair.

Principles and Practices

Clinicians can support patients and families through the challenging journey that accompanies hope’s evolution. Certain approaches (described more fully here) adopted through inner reflection — not simply deployed like tools in a toolkit — may be of assistance:

Relieving pain and other symptoms. Unrelieved pain triggers hopelessness, whereas controlling pain allows intrinsic hope to emerge. Hospice and palliative care providers are trained to do this.

Asking empathic questions, Hurried clinicians often want to deliver bad news quickly so they can go on to the next case. But when the news is that illness is incurable, certain questions can assist patients on the journey from focused to intrinsic hope — questions like “What do you hope to gain from treatment,” and “What do you hope we can help you with?”

Helping the body be the teacher. Downturns and new symptoms are distressing, but they often contain useful information that clinicians can use to help patients through denial and make constructive plans. Clinicians may view them as opportunities to help patients understand and accept the reality of illness progression.

Leaning on the door. If the message the clinician is trying to deliver triggers denial, trying to break the door down can be counterproductive. Instead, knocking gently and, when the door opens a crack, continuing the conversation at the patient’s own pace, perhaps over several encounters, builds trust. Often, the patient will open the door — not just to the clinician, but also to greater self-awareness, an antidote to denial.

Learning to see in the dark. Empathy means feeling what the patient feels — and staying emotionally centered. Compassion means standing unflinchingly with patients, letting them know that the clinician can tolerate the very situation they find intolerable — so perhaps, over time, they can too. This kind of silent courage is contagious.

Seeing through to the other side of despair. Depression is a clinical syndrome that should be detected and treated, but despair is different. When people realize they are going to die, despair may be an inevitable response; clinicians can expect it, accept it and work with it. Despair may be seen as the ultimate form of letting go, a necessary step in healing when cure is impossible, and a rehearsal for the ultimate release that will happen at the time of death. Faith means knowing something real lies beyond today’s darkness, not necessarily in religious terms (unless that’s important to the patient) — just as an aspect of practical spirituality.

Seeking Partners

In assisting patients and families through the transition from treatment to end-of-life care, primary care clinicians do not have to go it alone. Primary Care First incentivizes hospice and palliative care organizations to collaborate with clinicians who may lack the time or the training to guide patients through the evolution of their hopes.

Such clinicians can start these important conversations, then hand them off to trained teams to continue them where patients live. This enables clinicians to touch far larger numbers of patients than they could ever do face-to-face. The result is person-centered shared decision making that improves patients’ experience of care and boosts clinical outcomes. And, as evaluation of advanced illness management programs has shown, managing hope also cuts wasteful spending — but in the right way, by making sure seriously ill patients’ preferences truly drive their care.