Creating a Movement
Martin Luther King cried; ‘I have a DREAM’ and created a movement. The Johannesburg APCA conference made dreams come true with the Consensus statement for palliative care integration into health systems in Africa: Palliative Care for Africa. The event was chaired by Dr Gwen Malegwale Ramokgopa, the South African Deputy Minister of Health.
The consensus statement has responded to our dream with the political will to ensure that palliative care is available to all and HPCA (Hospice Palliative Care Association) has created the movement and means of implementation. What a dream to ensure that all peoples’ symptoms are professionally managed and having the possibility of dying with dignity…the stage has been set. Congratulations to all who are making this dream a reality.
The gathering of African Health Ministers on palliative care at the 2013 APCA/HPCA conference recommend & support the following 6 objectives:
1. The development of policy frameworks that strengthen health systems, by the integration of palliative care into hospital and community home-based care health services.
2. The integration of palliative care services into national health budgets to ensure sustainable services.
3. To ensure the availability of, and access to, essential medicines and technologies for the treatment of pain and other symptoms, including children.
4. The integration of palliative care into the nursing, medical school and other relevant training curricula and pre-service training programmes. In-service training and capacity building on palliative care for health care providers is also critical.
5. The sharing of palliative care best practices in clinical care, effective models and education. The provision of palliative care for particularly vulnerable groups such as neonates, children, adolescents, people with disabilities, and the elderly.
6. The development of partnerships across the continent between governments and other players in health, for sustainability of palliative care and quality improvement at all levels.
We look forward to a future where palliative care will be available to all.
Palliative Community Resource Centres
Butterfly House (Fairyland) and iBhabhathane (Mbekweni) are our palliative community resource centres which have been established to address ‘living’ with a life threatening illness or life limiting condition. These centres address holistic needs with a strong focus on health prevention and promotion and holistic wellness. The vision is to embrace life and living…a hopeful future. Innovative and responsive day care programmes are managed by an occupational therapist and assisted by a social worker, teacher, youth care workers, a cook and volunteers. These supportive programmes engage partnerships to expand the impact and influence and include embracing the needs of the primary caregivers of the most vulnerable in the communities.
Lee-Anne Opperman Social Worker & Bowy Programme Co-ordinator writes:
I am proud to be a part of the evolution of the Bowy House programme, now in partnership with Drakenstein Palliative Hospice. The Children’s Act 38 of 2005 stipulates that children should be cared for in their community and Bowy House, which was a residential care facility, could not be registered by Department of Social Development. The Monte Christo Miglat Board decided to transform the Bowy programme by returning the children to the care of their family and community and relocating supportive programmes to the Butterfly House community day care centre and home care programmes.
The aim of this approach to care is to provide resources and professional support that will assist the most vulnerable families to care for their children.
This family centered approach includes regular home visits. Children are fetched from home to attend programmes at Butterfly house and support programmes are offered to the primary caregivers. A holistic care plan is developed, implemented and monitored for each child that addresses their physical, emotional, social, health literacy, educational, spiritual and cultural needs. Holistic care is provided by the interdisciplinary team. This dynamic team helps to improve the quality of life of the child and family in the community by doing hope ‘with’ them.
Palliative End of Life Care
This is our core business and speciality and is in line with the traditional WHO definition of palliative care. Palliative care provision requires Professional Nurses and Social Workers with a speciality in Palliative Care and skills to ensure treatment and quality holistic symptom management of patients and their families infected by a life threatening illness. The interdisciplinary team is supervised by a palliative doctor and includes trained home based carers, volunteers, the patient and family.
In palliative care the patient is the head of the team and our interactions with the patient and the family is in line with medical ethical principles…we encourage patient participation and autonomy.
Nadia Plaatje writes:
Our theme song Hope Has Wings links with this year’s APCA/HPCA conference which highlighted the experiences of palliative care providers around the African continent. What stood out for those attending was the ‘MAKE DO’ attitude of the caring staff, patients and families despite their circumstances and lack of resources. Many of the people receiving and providing care live in poor financial circumstances or in rural areas and may experience extreme difficulty accessing resources or care, yet never give up.
Psychosocial support honours the psychological, social, emotional, spiritual and cultural essence of each individual. In my experience it’s striking how patients sometimes provide the platform for supporting themselves through their approach to life. From maintaining their humorous outlook, to showing compassion towards others or how their family is experiencing the diagnosis. So often a patient will look past their pain – albeit physical, emotional or social – and display a sense of courage and humour leaving us with hope and an appreciation for life’s trials and tribulations.
From the humorous warning of a patient to younger girls that she is 16 children richer because her husband told her to ‘show me your love’ when she was young and innocent, to a patient who despite her own discomfort makes sure her elderly mother-in-law is washed daily and wounds are dressed. All of this encapsulates how that positive ‘MAKE DO’ attitude is one of putting aside ones own concerns and ensuring others are comfortable.
Private Palliative Care
The private homecare need is growing in the community and we have the skills to help. Medical aids have acknowledged that palliative care is an essential service and there are patients who can afford additional professionally supervised homecare beyond what our free service can provide. We have appointed a professional nurse to supervise community caregivers to care for patients in their homes; this does not however exclude the free palliative care service when indicated. All income from the private homecare service is used to support the free service.
Sr Maxie Marais says: ‘I am really appreciative of the generosity (hartlikheid) I receive from the patients and their families as they welcome me into their homes; it feels as though I become a friend. The shared trust and respect is very heart warming, it makes me smile. I am sometimes amazed at the lack of understanding people have as to the hospice scope of work, many people think that we only look after cancer patients, but it is certainly not so. I am very confident that we deliver a quality service in the home as I always have the team to consult with who support me and the carers in our role. It is comforting to know that we have the knowledge and skills to provide good home care’.
Palliative Chronic Care
Care for patients suffering from a life threatening or life limiting condition (HIV, TB, Heart Disease, Diabetes, renal failure, old age etc.). Symptom control, medication adherence, physical care, psychosocial care and health literacy needs are addressed. The team is managed by a professional nurse and supported by staff nurses, auxiliary social workers and community caregivers. Preventative and promotive health are an essential part of this care service as knowledge around illness and the management could prevent the illness and its progression.
Laurika Beukes the Interdisciplinary Care Co-ordinator writes:
In June this year my journey at DPH commenced in to role of co-ordinating the interdisciplinary team. Even though I lead the team I am certainly not its head as the patient and family are the drivers of our care. Our role is to provide care in such a way that patients are enabled to make informed decisions. This process is facilitated through:
- Gaining a better understanding of the employees’ strengths and scope of practice to delegate tasks appropriately.
- Promotion of open communication within the interdisciplinary team to ensure transparency and quality patient care.
- Creating equal opportunities for all interdisciplinary team members to facilitate equitable decision making and fair resource distribution.
- Providing practical and emotional assistance and appropriate support to ensure an effective interdisciplinary team.
Drakenstein Palliative Hospice is already an amazing organisation and I am grateful for the opportunity to make my contribution.
Thank you for supporting Hospice
Hospice was again the recipient of the Gigi Passerini and Ferris Terblanche Golf Day at Wellington Golf Club and Ernest Massina organised a First Resident’s Golf Day at Pearl Valley. Both events originated from personal hospice experience and a wish to contribute to the work.
Thank you to our community and friends who rescued us! Funding has been exceptionally difficult in the past year, we did not know how we would make our budget and at one time we were considering scaling down our operation, but through support we will continue to positively impact on may lives.
The 4th annual La Capra Goat Run in aid of Hospice took place on 5th of October, at Fairview. It was sponsored by Assics and managed by the event organising team Pieter & Ellane Van Wyk, along with their farm manager, Donald Mouton.
The annual Vital Spring Classic will take place on 22nd November at Boschemeer, this has been such an important part of our funding for so many years, it is a wonderful partnership.
The service clubs Paarl Round Table, Drakenstein Rotary and Franschhoek Valley Rotary and their sponsors have donated infrastructure and partnerships have developed through the Diemersfontein Spring Walk and the Grande Roche event, PopART, MCMiqlat, Khula and the Drakenstein Health and Wellness Forum.
Our friends in Norway, the Koteng family, SpareBank, Vigdis and friends have all contributed significantly. Locally the Retief Family, Tim Allsop and Podlashuk Trust made significant contributions.
The private palliative care and hospice shops are becoming key to sustainability. Thank you for your support.