The Common Sense Guide to Improving Palliative Care > 1.8 Trajectories of Illness: Matching the Care System to How People Die
For the most part, we tend to organize different approaches to care of the dying around providers of services: hospitals, nursing homes, hospices, and private homes. Or, we organize care by specific diseases. But the reality is that either kind of organizational scheme ensures that people often do not get the care they need, when they most need it, and in an environment that makes sense. The conventional divisions, by disease and setting of care, do not work well because most patients with fatal conditions have multiple diseases and disabilities that require multiple care settings.
In the last few years, healthcare providers and organizations, as well as policymakers and public officials, have started to think about organizing services based on the trajectories that people follow when living with a fatal illness. Within the population of people with serious, progressive, and eventually fatal chronic illnesses are three subcategories: patients with a short period of evident decline, often from cancer; patients with long-term limitations with intermittent serious episodes, mostly heart and lung failure; and patients with prolonged dwindling, such as frailty and dementia. Each of these three pathways to dying presents its own challenges and requirements. Cancer patients, for instance, benefit from intense but relatively brief hospice care, while patients who have organ system failure require long-term standby support to live with their uncertain prognosis. Those who succumb to frailty and dementia will need intensely personal care through a long period of dependency. Figure 1.2 shows the three trajectories.
People at this final stage of life still want to live as well as possible and for as long as possible. They and their families have many goals: relief from symptoms, help with family burdens, control of personal expenditures for healthcare, keeping a high quality of life, being in control and maintaining dignity, and having an opportunity to come to peace with spiritual issues and relationships. These goals coexist with those of preventing illness and prolonging life, even when pursuing such goals requires aggressive or invasive treatments. Pursuing these goals simultaneously contrasts with the usual thinking that people near death need comfort and closure but not treatment. Instead of a transition from cure to care, people living with fatal chronic illnesses have many complex goals and priorities that evolve over time.
For people engaged in QI, this conceptual model is a way to see the forest and the trees. Becoming aware of the trajectories allows us to tailor services to match. People with congestive heart failure, for instance, often assume that they will always be rescued from exacerbations and live. If they realize instead that death will likely be rather sudden, they might see the importance of naming a healthcare proxy and expressing their preferences for end-of-life care. Families are often surprised when a loved one dies from lung failure, because no one has told them that this is the likely end. Healthcare professionals must reassess these practices and develop more appropriate patterns of care.
As people progress through their illness trajectory, they will have changing needs for assistance which, in turn, produce changing demands on family caregivers. Below are three lists detailing a number of issues important to caregivers of patients within each of the three trajectories.