By Joanne Lynn

America has a healthcare system that ably treats sudden threats to life, prevents many illnesses and cures much of what ails us. But that system cannot reliably and efficiently support us when we live with serious chronic illnesses and disabilities—a scenario that is now a predictable part of the end of life.

Most of us will spend more than a year being unable to care for our daily needs before we die. Instead of living meaningfully and comfortably, at a sustainable cost to our families and society, what we experience is terror: constant anxiety over unreliability and gaps between silos of service; high cost from waste and mismatch of services to needs; and widespread dishonesty about what we, as patients, probably face. This situation does not allow us to close out life with grace and control.

A Good Plan for Care

Patients and policy makers must require that clinicians communicate effectively with patients and families, not only to plan for death but also to develop a care plan that guides healthcare services through to end of life. Discussing clinical circumstances and their probable course, understanding the patient’s goals and priorities, and considering strategies to achieve them are essential.

Clinicians now work in such limited roles (only in the hospital or in the skilled nursing facility) that many are unaware of what the patient faces over time; teamwork across settings and computerized decision support are urgently needed. Some software programs offer customized treatment plan advice that can be shared between clinicians, patients and caregivers.

A good care plan must address expected situations requiring rapid decision making, such as appropriate response to cardiac arrest and death, and must deal with problematic treatment issues, such as hospitalization or artificial feeding. But care plans are not just for medical treatments: they honor personally meaningful relationships and activities, trade-offs between medical treatment and life enjoyment, and availability and skills of family and other caregivers.

The care plan must move with the patient across settings and time, be revised as situations change and at planned intervals, and be evaluated for achievement of goals. Evaluations should go to clinicians involved in the plan, so their work can improve.

Ongoing communication between a well-informed physician and the patient about the situation, the family’s values, treatment preferences and care goals is crucial to a care plan. Yet many physicians are reluctant to initiate these discussions, citing a lack of skills, training or time. Or they believe that patients and families do not want or need to have these conversations, and they worry about triggering a sense of hopelessness.

Often, discussions do not happen, and the care plan consists merely of medications and treatments misaligned with patients’ goals. The required reporting for nursing homes (Minimum Data Set; MDS) and homecare (Outcome Assessment Information Set; OASIS) does not record care goals, the possible trajectory or even the overall plan. Near the end of life, physicians must work more closely together than ever to help patients and families manage expectations, make treatment decisions and match goals to care.

Four Ways to Improve Care

How can we achieve useful communication and reliable care planning? First, every form and document that patients must fill out or use when receiving healthcare should provide information about acquiring a basic care plan. Medicare’s measurement of physician quality could reflect how well they plan for care in chronic illness. Second, we could ensure that a negotiated care plan will be documented when patients enter and leave the hospital or nursing home, upon hospice admission and every time the MDS or OASIS are filled out.

Third, patients could demand information (and clinicians could learn to provide it) about the course of their illness, including ambiguities: a thoughtful discussion of what might improve and worsen, what the personal care needs may be and what matters most to the patient and family.

Finally, we could engineer strong decision support for clinicians and patients, including feedback from prior patients about how the care plan worked. We should raise our voices when care plans fall short. How it is that we have come to accept widespread false hope? Why have we tolerated clinicians making good incomes from unwanted tests and treatments? A bit of outrage would be a good thing.

Chronically ill patients and their families manage increasingly complex conditions. They deserve to know the medical situation, and clinicians need to know the social and personal information that shapes why patients and families want certain care strategies. Ongoing conversation and negotiation should engender a practical plan, tailored to the individual. That is the heart of reform for the last phase of life.

Joanne Lynn, M.D., is director of the Altarum Institute Center for Elder Care and Advanced Illness and co-author of Handbook for Mortals: Guidance for People Facing Serious Illness.

Editor’s Note: This article appears in the November/December, 2011, issue of Aging Today, ASA’s bi-monthly newspaper covering issues in aging research, practice and policy nationwide. ASA members receive Aging Today as a member benefit; non-members may purchase subscriptions at our online store.