DESIGNING EVALUATION AND FOLLOW UP

From the beginning, a set of indicators and a follow-up plan must be elabo-rated. There are frequent questions and dilemmas that can be resolved with common sense (table 4) .

Table 4. Common dilemmas and challenges

Question Recommendation

Where to place the

services? In the initial phases, the criteria for implementing services are based on feasibility, available leadership, and the impact of the referral service. More generally, the initial aim would be to begin with different models of services in different settings (hospital, home, intermediate-care in rural and urban settings).

Integration into existing services by developing palliative care teams of a doctor and/or clinical officer, nurse, social worker in each unit.

Who are the target patients in the initial phases?

In some countries, palliative care (PC) starts to be provided for advanced cancer patients and, subsequently, gets extended to cover other patients with life limiting conditions. In Africa the majority of palliative care patients are HIV and cancer patients.

There are experiences starting with all types of patients.

How many specialist services are needed?

This can be variable. A good criterion for the long-term aim is to have at least one service available in every district, and for complex patients from every setting to have access to some specialist services. A palliative care consultation team can be used to provide consultations to primary and secondary providers.

How many specialist

beds are needed? The need for PC beds is variable and depends on patient needs and on the capacity of existing services. In European countries the estimate is for between 80 and 100 beds per million inhabitants.

These beds can be located in acute hospitals, intermediate care, or nursing home settings, in various proportions. These should be minimal, especially in LMICS, because of costs and the importance of delivering home care services to patients and families.

Do we need extra beds for implementing specialist PC units?

Not necessarily. In most countries the PC specialist units result from the re-allocation of pre-existing beds, or even re-assignment within the context of bed number reduction.

Which is the best

model of service? Create a set of different services in different settings.

Hospice initiatives and nursing could be the first service-of-choice since they are supported by charitable organizations and NGOs, which play a significant role in countries such as the United Kingdom. Outpatient, home-based services linked to a health unit

How should specialist services be

implemented?

In the initial phase, it is recommended to start with palliative care support teams (at home or at hospital), since these are the most feasible.

In some settings, the so-called general and/or transitional measures are good ways to start (i.e.: specialist nurses, dedicated doctors or other professionals, etc.).

Define the minimum HR requirements and minimum service delivery package linked to an essential medicines list including the three step WHO pain ladder approach, within the health system and required finances

Where should specialist services be implemented?

In the initial phases of development, the most relevant criteria for choosing locations is feasibility, based on the existence of good leadership, with institutional commitment. In many countries initial phases are planned in tertiary hospitals, where cancer and aids services are based.

It depends on the setting and the level of development:

–Setting examples: specific in a cancer institute, or paediatric, and mixed in the community or in a general hospital;

–Some patients need specific measures (ambient, preventive, etc.):

HIV, MDR TB, dementia, Ebola, paediatrics;

–Time examples: starting with cancer, and extending after to non-can-cer.

Common barriers and/or resistances

General resistances Start with solid experiences/visit model programs.

Select easy/feasible/short-term results.

Elaborate and disseminate results of services.

“We don’t need palliative care services, we are already doing them”

Identify areas of improvement in the care of patients.

Use quality evaluation and improvement processes to improve the quality of palliative care.

For evidence of the results of initial implemented services, choose simple measures of effectiveness, efficiency, and satisfaction.

Have improved palliative care standards.

“We don’t have so many patients”

A good response is to conduct a prevalence study in the different settings (using existing tools to identify patients in need).

Wherever there are people there a need for palliative care. The difference is size of the problem and level of need.

Access to essential medicines

If there is resistance to implementation, initially, a wide access policy of a national regulation, it is recommended to find

transitional mechanisms to provide essential medicines to specialist services in their initial phases. Strong barriers to access are active in the professional, society, and culture, and need to be addressed.

Controversies over

the leadership The “administrative” leadership and services depend in most instances on the managerial criteria.

Need for sensitization as part of the program for policy makers, managers, health workers and patients and their families.

Controversies

Describe the existing knowledge of epidemiology.

Emphasize the population-based perspective.

Create and evaluate models of chronic / palliative care in the community and other settings.

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ASSESSING THE NEED FOR PALLIATIVE CARE