Pillar 1: advocacy

Advocacy achieved change at community, regional and national levels. Regionally a ‘Consensus Statement for Palliative Care Integration into Health Systems in Africa’ was adopted at the 2013 APCA hosted African Ministers’ meeting, committing to the ongoing integration of palliative care in each country represented [22]. Palliative care was included in the national plans of Kenya and Uganda and the National Health Strategic Plan in Zambia and Rwanda [23,24]. In Rwanda, the project directly led to palliative care being included in the Health Management Information System, national non–communicable diseases division planning, and to the adoption of national clinical guidelines disseminated to the hospitals.

Across the 12 hospital sites, 4153 community members attended advocacy awareness training through 73 events. These included sensitization for the hospital community and their referring hospitals and health centers, and training of Community Health Volunteers. Media coverage and community events, including burials and church services, increased coverage with Rwanda reporting 10 000 radio listeners supported by the national cellphone provider. Senior staff participation enhanced advocacy.

Pillar 2: Building staff capacity through training and mentoring

By the end of the program, national partners were sustainably delivering training. Clinical placement sites were developed in each country providing centers of excellence to model best practice. 781 health professionals were trained in the 12 hospitals and their referring hospitals, of whom 520 also completed clinical placements where staff were mentored by clinical experts at in–country clinical placement sites (some already existing and others strengthened for the program) or the MPCU center of excellence in Uganda where all Rwanda trainees attended. A further 123 were trained as trainers. Additional requests from hospitals for training saw 39 staff trained in children’s palliative care, 81 in research skills and 60 in morphine procurement and prescribing (the latter as a national initiative in Rwanda). Training, utilizing a combination of classroom, ward sessions and clinical modeling, extended both depth and breadth of knowledge, establishing a critical mass of trained personnel with knowledge, skills and resources and also changed attitudes and values. Basic and advanced training took place across different cadres ( Table 2 ).

Pre and post course questionnaires (immediate post training and six months post training) demonstrated that participants had improved their knowledge and skills, with improved performance and confidence. The final evaluation showed that training led to a step–change in clinical skills, including the ability to identify those requiring palliative care, to discuss with patients, and a better understanding of pain management. A trainee’s response of “Pain is what the patient says it is,” captured this shift; revealing how this commonly taught concept is becoming embedded in practice. Health workers described how this changed their clinical practice, by allowing patients to take extra doses of analgesia for breakthrough pain “without fear”. This included understanding children’s pain. A senior nurse explained of her staff:

“Before they did not attend to children’s pain because they didn’t imagine they feel the level of pain that they do and they didn’t know how to score it. But now they manage pain even in children.” (Nurse, Uganda)

Training created a change in mind set which practitioners considered, a “life changing” experience: “before I thought it (palliative care) was about giving up” explained one of the nurses from Kenya until she realized that palliation was active care. Training enabled staff to communicate better:

“Now I have the heart of listening to the patients, talking, counselling and assessing them.” (Nurse, Uganda)

Thirty–six health professionals undertook Palliative Care Diplomas and Degrees which gave staff increased status within their hospitals, and enabled staff to adopt a “whole systems approach” positioning them as palliative care leaders and advocates:

“The training helped me to approach people in politics, or senior level. Before, the chief county officer would not take my phone calls. They have also recognised us as specialists. Now I am interested in the strategic plan.” (Specialist trainee, Kenya)

“Doctors have recognised that me and the others [specialist trainee colleagues] are experts in some PC areas… people ask us to do counselling, especially.” (Nurse, Zambia)

Training was one component of building staff capacity, the other was on–site mentoring. Mentoring was provided by national partners, lead partners and overseas mentor colleagues. International mentors passed on their expertise through on–the–job training and clinical modeling. As a Kenyan health worker explained, this was essential for consolidating the clinical skills training:

“KEHPCA [the Kenyan Palliative Care Association, who delivered the training course] gave us the theory, and mentorship gave us the practice.” (Health worker, Kenya)

Palliative care teaching was embedded into pre–service, in–service and postgraduate health worker training institutions. The program successfully supported integration of palliative care into the undergraduate medical curriculum at the University of Zambia (UNZA), School of Medicine and the Faculty of Health Sciences at Moi University, Kenya. A Curriculum Toolkit: “A practical guide to integrating palliative care into Health Professional Education” (http://www.ed.ac.uk/global-health/research/project-profiles/health-systems-strengthening/thet/resources) was developed at the request of a country partner university, to give practical guidance and resources regarding the integration of palliative care core competencies into curriculums for health care workers.

Pillar 3: service delivery

Improved outcomes were achieved across three core areas: improved identification of more patients for palliative care, development of management/referral systems, and morphine prescribing.

Identification of patients for palliative care

Overall, 2.7 times more patients were identified for palliative care, with some hospitals seeing an increase of 13 times and others formally identifying patients for the first time ( Figure 1 and Table 3 ).

Figure 1.  Number of patients using the palliative care services at the 12 project hospitals.

Many hospitals adopted a model of a named “link–nurse” in each ward or unit liaising with and supported by a specialist palliative care team. These nurses identified patients in their wards, and managed their care until their complexity required a more specialist input.

These systems of early identification became core to the integration of palliative care, preventing unnecessary medical interventions and starting discussions between patients, families and clinical staff on patient needs, goals and progress. They also facilitated integration, through development of an extended team and a referral network. One Kenyan health care worker commented:

“Before I didn’t know how to liaise with the PC team. But then they gave us the mandate to be part of them. I could call them when I’m not able to handle some patients. The first time I needed to counsel a patient I called someone [from the core team] to assist me, then I did it myself, and then when someone asked me I did it with her.” (Nutritionist, Kenya)

The researchers advocated for documentation of palliative care needs and services by nurses in case notes to become routine practice, so that patients receive appropriate and documented care. This remained challenging: at the end of the project 75% had information recorded (almost always by doctors) in their clinical records. In Rwanda a more advanced system is being trialled enabling health workers to write limited information in the notes such that there is a management plan within a national level template.

Clinical management and referrals

All hospitals demonstrated improved policies and professional standards. The program contributed to 35 different strategies, standards, and protocols, including referral documentation, patient registers, assessment forms, clinical and audit protocols, national training materials and policies. Eleven new palliative care clinical protocols were adapted (from MPCU) and adopted as national documents in three countries, with adoption ongoing in the remaining country.

All hospitals developed stronger referral linkages, with central points for receiving and logging referrals. Some had a clear written referrals process. Most had a telephone referral system working alongside. An innovative approach was the establishing of a 24–hour telephone hotline at MTRH, Kenya, advertised on posters throughout the hospital for internal referrals, and given to patients on discharge.

Morphine prescribing

Six of the 12 hospitals had no oral morphine available initially; all had it by the end. Morphine consumption and consistency of supply increased in all hospitals ( Table 4 ). Specific prescribing training and continuing medical education sessions conducted by national partners, trainers, visiting mentors and by staff of the nascent palliative care teams broke down myths about morphine and empowered staff to prescribe and dispense morphine. A Ugandan nurse described how since the training morphine orders no longer expired on shelves but were prescribed by staff no longer fearful of morphine.

In Rwanda, the program facilitated a national morphine framework meeting which resulted in the first national procurement agreements for morphine. The MoH requested further training for doctors and pharmacists, who then facilitated morphine prescription as a first–choice therapy for unrelenting pain. There was a shift in attitude and understanding in all countries. One doctor explained:

“As of now, I have taught the group that there should be no pain in any patient. Now we are able to prescribe morphine.” (Doctor, Kenya)

While managing morphine distribution, legislation and regulation was challenging but innovative strategies emerged:

“They (pharmacists who have undergone training) could produce it and just give it to the other pharmacists. Or weigh it and send it to the other pharmacies. This would help a great deal – because I have come across patients who do not get morphine at the weekends.” (Senior Doctor, Kenya).

The most remarkable change reported through the use of morphine was “silence”. Health workers in a number of hospitals poignantly said it was the absence of patients crying in pain on wards that spoke most powerfully of palliative care:

“The staff are starting to understand that patients should not be screaming and crying in hospital!” (Lead Nurse, Kenya)

Health workers reported that not only patients’ physical pain but also holistic pain was addressed and relieved,

“Initially we didn’t know we were supposed to take care of pain for all of a patient’s life. As of now, I have taught the group that there should be no pain in any patient.” (Doctor, Kenya)

“I learnt about holistic care and finding out about what the patient needs….treating the patient as a person, not a case. Sometimes you feel you hit a brick wall, but PC taught me there is always something we can do.” (Medical student, Zambia)

Staff were empowered to broach issues of death and dying and challenge cultural beliefs:

“I understood PC in a holistic manner not just for dying patients but also the chronically ill. I understood that it meant social, spiritual and psychological support. I (myself) went and spoke in churches, and went with a local organisation to do screening and PC awareness at the churches. Right now I have a passion for PC.” (Social Worker, Kenya)

“At first people used to think perhaps you are cursing the patient to die to break bad news, now we are breaking bad news we realise it is not true.” (Health Worker, Mazabuka)

Senior staff believed that the integration of palliative care empowered patients, allowing them to plan for the future. Staff described how integrated palliative care enhanced the whole care system. They spoke of no longer feeling helpless, because they could do something for patients and engage with families better. Their training helped them outside their work:

“The training was fantastic – life–changing. Not only in the workplace, but also at home.” (Pharmacist, Kenya)

Pillar 4: partnership

Partnerships were developed at four levels. Regionally, hospital staff were supported to meet at national and international workshops and conferences on palliative care to present work and participate in specialist training. These included the Kenya and Uganda national palliative care conferences, the African Palliative Care Association conference, the International Multidisciplinary Pain Congress, the University of Edinburgh Global Palliative Care symposium, the International Conference on Advances in Palliative Care, and Pain and Patient Symptom Management.

At national level national partners, who were the lynchpin of project delivery and the main link between the steering group and the local hospitals, received advocacy training and funding both within national associations and within the government systems. In three countries the National Associations were a valuable asset to hospitals. In Rwanda the Ministry of Health took on the support role delivered by other country national associations At hospital level staff worked with local stakeholders, community volunteer workers, their referring hospitals and clinics. International mentors partnered with hospitals and national associations. Mentorship was delivered at different levels: 22 mentors from the UK visited hospitals, providing 621 on–site mentorship days and 145 days distance support; south–to–south mentorship was provided by the MPCU team and by National Associations and palliative care coordinators. Mentorship allowed staff to see new ways to use existing resources, while exchange visits to other facilities to see clinical practice stimulated quality improvement ideas. UK mentors spoke of reciprocal learning. For example, the major role of the family in the SSA context, the need for innovation in resource–constrained settings, and the impact of total integration into community hospitals, all provided models which mentors felt could influence UK care.

Strengths and limitations

This program was set up as a multi–country intervention to test integration strategies for palliative care in different locations and sizes of facilities. We did not have a control arm. We recognize that no change happens in isolation and the changes that this program brought about must be interpreted in the context of the dynamic health systems of each country. We did not collect health–related quality of life information directly from patients. We state the need to view the impact of this program in the context of the overall developments within each country, and to assess long–term outcomes.

Implications

No one model of palliative care service provision fits every setting [25]. Innovations that embed palliative care values and integrate palliative care as part of good clinical practice within all specialties, cadres, and for all staff and for all diseases are indicated. The World Health Assembly resolution called for the Director General to “encourage research on models of palliative care that are effective in low and middle–income countries, taking into consideration good practice” [1]. This paper is one of the first programmes to report on integrating services in different hospitals in different countries in SSA. It provides a blueprint for integrated care provision throughout Africa. Specific recommendations which directly responds to the WHA Resolution are listed in Table 5 .