Comments of Chapter 7: Supportive and palliative care

What innovative strategies could fill the gaps?  

A systematic review identified the following domains and themes that conceptualize satisfaction with end-of-life care and the effectiveness of palliative care interventions (82):

- Accessibility: taking as much time as needed, non-abandonment, maintaining contact, availability, timeliness, focusing on the patient, providing needed services.

- Coordination: using other members of the team effectively and efficiently, providing coverage, maintaining consistency, helping with navigation of the healthcare system.

- Competence: knowledge and skills, symptom management, comfort with death and dying, knowing when to stop.

- Communication and relationships: personal interaction, caring, understanding, reassurance.

- Education: providing information in a way that others could understand on all relevant topics, including what to expect, financial issues, advance care planning.

- Emotional support: compassion, responsiveness to emotional needs, maintaining hope and a positive attitude, physical touch.

- Personalization: treating the whole person, not just the disease, treating the patient as unique, respecting values and lifestyles, considering the social situation, including the family.

- Support of patients' decision-making: maintaining a sense of control, avoiding inappropriate prolongation of dying.

Those who are working to improve supportive and palliative care should understand how to frame their efforts in relation to a larger context of the problem and gauge it against the domains of satisfaction with care as described above.


The big picture-system building and customizations

Innovations will have no impact if they are not incorporated into systems of care. It has been shown, for instance, that an integrated network of palliative care services including home care teams, acute hospital teams and beds in long-term care facilities can resolve many of the problems of coordination and continuity of patient care across settings (83).

Going a step further, service development should take into account the need for customization and development of systems for different groups of patients (84).

By separating patients who are near the end of life based on functional trajectories, it is possible to identify and serve population groups with sufficiently similar health care needs, rhythms of needs and priorities to make the segment useful in planning. In light of more common needs, planners are able to structure the supports, service arrays and care delivery arrangements so that they will meet the needs of anyone in that segment reasonably well, even though they may be mismatched to other segments. As is usually the case, one size does not fit all and even for patients with complex chronic diseases the trajectory may well be different and follow that of the predominant illness.

In many parts of the world this has already taken place. Palliative care services are increasingly customized to meet population needs. Though a full range of services are already present in terms of home hospice services, inpatient hospice facilities and hospital-based palliative care services, Australia (85) and the UK (86) have opted to develop end-of-life programs catering for the frail elderly in nursing homes as the conventional model of palliative care does not serve this population well. Similarly, the  Program of All-inclusive Care (PACE) project (87) provides comprehensive care for the frail elderly at home in San Francisco, allowing them to spend their days, up till the last if possible, at home. This program has now been adopted in many parts of America. Other chronic disease management programs incorporating palliative care practices and expertise have shown promising results (88).

Though not labeled as such, all these microsystems have, or aspire to have, elements of the «advanced medical home» (89). The concept of a medical home was first introduced by the American Academy of Pediatrics and has been described as providing care that is accessible, continuous, comprehensive, family-centered, coordinated, compassionate, and culturally effective (90). The key attributes of an advanced medical home include:

- A personal physician, who has an ongoing relationship with the patient and is trained to provide first-contact, continuous and comprehensive care. This physician can either be a trained family physician or a specialist.

- A multidisciplinary team, led by the physician, which collectively takes responsibility for the ongoing care of patients.

- Holistic care, which provides for all the healthcare needs of patients and their loved ones, and arranges referral to other qualified professionals if necessary.

- Coordinated and integrated care across specialty and care settings.

- Emphasis on quality and safety, which is assured by a care planning process, evidencebased medicine, clinical decision-support tools, performance measurement, active participation of patients in decision-making, information technology, quality improvement activities.

- Enhanced access availability through open scheduling, extended hours and new options for communication.

- Payment models that are appropriate for the added value provided to patients, which falls outside the face-to-face visit and supports the use of health information technology for quality improvement.

This must be supported by policies laying the groundwork for an effective healthcare system and society (91). In the many countries, policies have largely led to palliative care being embedded into the fabric of healthcare delivery (92-94). Advocacy with policy makers will thus be a key aspect in sustained gains.

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