What do we need to know?

The extent to which the illness trajectories identified in Scotland reflect what happens in other contexts and groups needs to be assessed. If they do, they could provide the foundation for the transformation of the lived experience of dying. Similar efforts are required to gain a better understanding of the social, psychological and spiritual issues faced by loved ones and caregivers in particular.

A much larger and more complex question is: What would it take to design a health system that meets the needs of patients with complex chronic diseases and their loved ones? This could be addressed at four levels, described by Donald Berwick, that characterize a high-quality health system (76): the experience of patients and their families (Level A); the functioning of small units of care delivery (microsystems, Level B); the functioning of the organizations that house or support microsystems (Level C); and the environment of policy, payment, regulation (Level D) that influences Levels B and C.

Level A: “Restorative care” versus “palliative treatment”     

One of the key challenges in the management of patients with complex chronic diseases is the need to maintain the fine balance between a disease modifying or restorative approach and the use of interventions that are mainly designed for symptom control. However, little research has been carried out on the timing of withdrawal of diseasemodifying therapies in patients nearing the end of life. When would the risk-benefit ratio of aspirin given for stroke prophylaxis be considered too high for a patient who is deteriorating from cancer? Similarly, is it still reasonable to consider sympatholytic agents in a patient with cardiac failure who is also suffering from renal failure? There
is even less evidence on the interaction between illnesses in a patient with multiple co-morbidities and its implication on prognoses. Research in such circumstances will be challenging but the resulting improved decision aids could certainly enable health professionals to make better judgments, and advise patients and their loved ones.

Level B: ‘Operationalizing’ knowledge  

There is already a significant body of information on what constitutes good supportive and palliative care at the end of life. It is unclear, however, how these two terms complement or overlap each other, or how should they be used when communicating with patients and loved ones. The term palliative care, for instance, is fraught with negative connotations particularly for patients and family members who equate it with impending death.

Other key questions are: How can we best incorporate the knowledge available into systems of care such that health professionals have the necessary support when they need it? How do we ensure that patients and their loved ones get the care that they need?

Regarding the latter, it is important to recognize that it may be challenging for patients to express their supportive care needs to health care providers, particularly if they feel that by discussing symptoms or side effects they may: a) be viewed as bad patients or complainers, b) distract the physician from treating the underlying disease. Moreover, it is often challenging for patients to describe subjective symptoms (e.g., pain, dyspnea, fatigue) and side effects, and this task is made much more difficult for those dealing with multiple conditions. In fact, research suggests that formulating and articulating questions about symptoms such as pain is a context-dependent, time-intensive process that requires reflection, knowledge, and a good use of language (77).

Level C: How can we build an enduring system of care?

Supportive care and palliative care service delivery is a disjointed and fragmented enterprise in most parts of the world, involving a variety of people (e.g. primary physician, nurse practitioner, disease specialist, symptom specialist, psychosocial specialist, allied health professionals, family, friends and community networks) and locations (e.g. community clinics, acute care hospitals, long-term care centers, rehabilitation programs/centers, community support organizations, hospices and the home). As a result, patients continue to be cared for in an episodic, illness-orientated, complaintand transaction-based system. Patients who live with multiple chronic illnesses fare particularly poorly in this environment of single-organ specialty and single-setting care.

Transitions across care settings are also fraught with challenging attempts to establish continuity. How do we best align our services and systems with an increasingly complex and chronically ill population?

Will the isolated family physician still have a role in the management of such patients? If so, where do they figure in the increasingly complex system of care required to manage this group of patients? Silos of care are increasingly giving way to integrated and comprehensive systems that
span care settings and disease states. We know that in many chronic illnesses, even near the end of life, it is not possible to distinguish between restorative and palliative care and such patients do not simply transit from one modality to another (78-79). How then should our healthcare system develop such that transitions between professionals with the requisite specialist skills are smooth?

Level D: What reimbursement model will best serve the system? 

Currently there are very few financial incentives for institutions and physicians to facilitate the smooth transition between care settings in most cases, let alone in those in which multiple chronic conditions co-exist. What funding mechanism will provide the most cost-effective supportive and palliative care system and yet ensure reimbursement for value-added services such as family conferences, care liaison, counseling and healthcare worker-patient communication via new media in a changing world? In Kansas they are testing a model of financial reimbursement, drawn up as an interdisciplinary service agreement between the hospital and the palliative care team, and based on achievement of quality standards with defined staffing ratios (80).

Can social systems and policies also ensure that families' needs are addressed? In Canada (81) and other enlightened countries, there is compassionate care benefit in the form of paid leave for caregivers. Can more be done to help families?

What patients need may not be what they want. Right-siting of care, a catch term in healthcare management, is often lost on patients and their families. The best and most affordable place of care for a patient may not be in the acute hospital but in an inpatient hospice facility. Patients and their families may not concur. In planning services, how do patients' preferences and knowledge about end-of-life care options interact with healthcare providers and public attitudes and knowledge about end-of-life care?

Lastly, it is important to emphasize that efforts to answer any of the above questions must take into account the special needs of children, adolescents and multi-cultural communities.