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.
Good Morning All
Yesterday was World Cancer day and with that in mind we are posting the following article that was placed on the world cancer day website: http://www.worldcancerday.org/wcd-home
World Cancer Day 2013 (4 February 2013) will focus on Target 5 of the World Cancer Declaration: Dispel damaging myths and misconceptions about cancer, under the tagline “Cancer – Did you know?”. World Cancer Day is a chance to raise our collective voices in the name of improving general knowledge around cancer and dismissing misconceptions about the disease. From a global level, we will be focusing our messaging on the four myths above. In addition to being in-line with our global advocacy goals, we believe these overarching myths leave a lot of flexibility for members, partners and supporters to adapt and expand on for their own needs.
CANCER – DID YOU KNOW:
Truth: Cancer is not just a health issue. It has wide-reaching social, economic, development, and human rights implications.
CANCER AND DEVELOPMENT
Cancer constitutes a major challenge to development, undermining social and economic advances throughout the world.
- Approximately 47% of cancer cases and 55% of cancer deaths occur in less developed regions of the world.
- The situation is predicted to get worse: by 2030, if current trends continue, cancer cases will increase by 81% in developing countries.
- Today, the impact of cancer on individuals, communities and populations threatens to prevent the achievement of the Millennium Development Goals (MDGs) by 2015.
- Cancer is both a cause and an outcome of poverty. Cancer negatively impacts families’ ability to earn an income, with high treatment costs pushing them further into poverty. At the same time, poverty, lack of access to education and healthcare increases a person’s risk of getting cancer and dying from the disease.
- Cancer is threatening further improvements in women’s health and gender equality. Just two cancers, cervical and breast, together account for over 750,000 deaths each year with the large majority of deaths occurring in developing countries.
Global Advocacy Message
Cancer prevention and control interventions must be included in the newest of global development goals for the post-2015 agenda.
Broadening the future global development goals to include proven, economically sound interventions that span the entire cancer control and care continuum can strengthen health systems, and increase capacity to respond to all health challenges faced by individuals, families and communities.
CANCER AND HEALTH POLICY
An approach including all areas of government (not just health ministries) is necessary for the effective prevention and control of cancer.
- Most premature deaths from cancer are preventable by making policy changes in sectors in and beyond health such as education, finance, development, transport, agriculture, etc.
- A ‘whole-of-society’ approach that includes civil society (e.g. NGOs), academia, private sector, people living with and affected by cancer, and others, is just as important to support cancer prevention and control.
Global Advocacy Message
A whole-of-government approach that promotes multisectoral action and partnerships is essential to develop and implement policies and programs that reduce exposure to risks, promote healthy behaviors, and implement effective and affordable interventions for early detection, treatment and care of cancer.
INVESTING IN CANCER
Investing in prevention and early detection of cancer is cheaper than dealing with the consequences.
- The cost of cancer is estimated to reach USD 458 billion per year in 2030, yet cost effective strategies to address the common cancer risk factors (such as tobacco use, alcohol abuse, unhealthy diet and physical inactivity) would cost only USD 2 billion per year.
- Whilst non-communicable diseases (NCDs) account for 65% of annual deaths globally, less than 3% (USD 503 million out of USD 22 billion) of overall development assistance for health was allocated to the issue in 2007, compared to approximately 40% allocated to HIV/AIDS.
Global Advocacy Message
Investment in proven, cost-effective cancer solutions is an imperative. Resource allocation should be according to country-specific situations and needs determined as part of a national cancer control plan.
MILLENNIUM DEVELOPMENT GOALS
The Millennium Development Goals (MDGs) are eight international development goals that were officially established after the Millennium Summit of the United Nations in 2000, following the adoption of the United Nations Millennium Declaration. The 189 United Nations member states (nations) made a promise to free people from extreme poverty and multiple deprivations. This pledge turned into the eight Millennium Development Goals, which relate to extreme poverty and hunger, maternal health, child mortality, gender equality, environmental sustainability, universal primary education, HIV/AIDS, and a global partnership for development.
Truth: Cancer is a global epidemic. It affects all ages and socio-economic groups, with developing countries bearing a disproportionate burden.
CANCER IN DEVELOPING COUNTRIES
Cancer is a global issue and becoming an increasing public health problem in poorer countries.
- Cancer now accounts for more deaths worldwide than HIV/AIDS, tuberculosis and malaria combined. Of the 7.6 million global deaths from cancer in 2008, more than 55% occurred in less developed regions of the world. By 2030, 60-70% of the estimated 21.4 million new cancer cases per year are predicted to occur in developing countries.
- Cervical cancer is just one example of the disproportionate burden borne in the developing world. Over 85% of the 275,000 woman who die every year from cervical cancer are from developing countries. If left unchecked, by 2030 cervical cancer will kill as many as 430,000 women per year, virtually all in these countries.
- There are massive inequities in access to pain relief with more than 99%of untreated and painful deaths occurring in developing countries. In 2009, more than 90% of the global consumption of opioid analgesics was in Australia, Canada, New Zealand, the US and some European countries; with less than 10% of global quantities used by the other 80% of the world’s population.
Global Advocacy Message
Efficacious and cost-effective interventions must be made available in an equitable manner through cancer prevention, early detection and treatment delivered as part of national cancer control plans (NCCPs) that respond to the national cancer burden. Access to effective, quality and affordable cancer services is a right of all individuals and should not be determined by where you live.
CANCER VS INFECTIOUS DISEASES
Many developing countries are now facing a growing double burden of infectious diseases and non-communicable diseases (NCDs), including cancer.
- Whilst some question the appropriateness and necessity of cancer interventions in countries facing high burdens of infectious diseases including HIV/AIDS, the distinction between infectious diseases and NCDs is in fact narrowing with HIV/AIDS moving in many cases from an acute, fatal disease to a chronic illness, and many cancers of high incidence in developing countries having been caused by chronic infections.
- NCDs including cancer, and infectious diseases, should not be seen as competing priorities but instead as global health issues that disproportionately affect developing countries. They require an integrated approach that builds capacity in national health systems to protect individuals across the spectrum of diseases.
Global Advocacy Message
Resource appropriate and evidence-based improvements in cancer control should be part of overall health systems strengthening in developing countries. Investment in a diagonal approach that focuses on the integration of health services, including the incorporation of cancer prevention and management into primary healthcare will tackle cancer-specific priorities while addressing the gaps within the health system, optimizing the use of resources and increasing capacity to respond to many diseases and population groups.
CANCER AND AGING POPULATIONS
Cancer not only affects the elderly, but young men and women, often in their prime working years, particularly in the developing world.
- Approximately 50% of cancer in developing countries occurs in individuals less than 65 years of age. This is a tragedy for families and for populations, and has the potential to have a long-term impact on economic development.
- Most of the 750,000 cervical and breast cancer deaths per year occur during a woman’s reproductive years.
- Cancer is also a disease of young people. For children aged 5-14, cancer is a leading cause of death in many countries. However, mortality is only part of the picture, with cancer-related illness and disability limiting opportunities for education, and ultimately impeding full participation in the workforce. Parents and caregivers of children may also be severely impacted by the significant costs of treatment, pushing families further into poverty.
Global Advocacy Message
Individuals, families and communities are affected by cancer at all ages. The core elements of a cancer control and care continuum must be decided within each country according to knowledge of the cancer burden based on information from population-based cancer registries, as well as country-specific cancer risks for all ages, existing health resources and infrastructure, political and social conditions, and cultural beliefs and practices.
CANCER AND WEALTH
The impact of cancer on all populations is devastating but especially so for poor, vulnerable and socially disadvantaged people who get sicker and die sooner as a result of cancer.
- Demographic differences correlate highly with common cancer risk factors e.g. poor nutrition, tobacco use, physical inactivity and alcohol.
- Inequities in access to cancer services are also associated with socioeconomic status, with poor and vulnerable populations unable to afford expensive cancer medicines and treatments which must often be paid by patients out-of-pocket, as well as experiencing other obstacles to access such as distance to quality treatment facilities.
Global Advocacy Message
Social protection measures, including universal health coverage, are essential to ensure that all individuals and families have full access to healthcare and opportunities to prevent and control cancer.
All people should have access to proven effective cancer treatment and services on equal terms, and without suffering economic hardship as a consequence.
Truth: Many cancers that were once considered a death sentence can now be cured and for many more people, their cancer can be treated effectively.
ADVANCES IN CANCER PREVENTION AND TREATMENT
Advances in understanding risk and prevention, early detection and treatment have revolutionized the management of cancer leading to improved outcomes for patients.
- With few exceptions, early stage cancers are less lethal and more treatable than late stage cancers.
- In the United States alone, there are 12 million Americans living with cancer today.
- In countries with more than a decade of experience with organised breast cancer screening programs, the reduction in mortality from breast cancer is significant, with for example, Australia’s mammography screening programs established in 1991, integral to achieving an almost 30% reduction in mortality from breast cancer over the last two decades.
- Cervical cancer rates in wealthier nations plummeted once Pap testing was introduced broadly – and rates continue to lower, with recent figures showing that in some countries such as the UK, mortality has halved between 1990 and 2010.
Global Advocacy Message
Cost-effective strategies for cancer control such as breast and cervical cancer screening as well as early detection exist for all resource settings and can be tailored to the population-based need.
ACCESS TO CANCER SERVICES
Sadly, access to comprehensive cancer services, including access to essential medicines, is largely restricted to wealthy countries and individuals.
- Globally, closing the gap in cancer outcomes between rich and poor countries is an equity imperative.
- We know it is possible; there are proven examples of low resource settings providing effective cancer services that span the spectrum of cancer control and care from prevention through to palliation, dispelling the myth that this approach is only feasible in high resource settings.
Global Advocacy Message
The core elements of a cancer control and care continuum must be decided within each country based on existing health resources and infrastructure, the burden of cancer based on information from population-based cancer registries, country-specific cancer risks, political and social conditions, and cultural beliefs and practices. National cancer control plans (NCCPs) should consider the full spectrum of multidisciplinary cancer services and infrastructure across the continuum of cancer control and care.
DELIVERY OF CANCER SERVICES IN ALL RESOURCE SETTINGS
Increasing public and political awareness that solutions exist and can be implemented and integrated in all resource settings is essential to achieving equity in cancer prevention and care.
- It is a common misconception that cancer solutions are too complex and expensive for developing countries.
- The cost of interventions does not have to be prohibitively expensive. A recent report estimates that most of the off-patent generic cancer medicines required for developing countries are available for less than $US 100 per course of treatment, and nearly all for under $US 1000. For life-saving vaccines, such as the human papilloma virus (HPV) vaccine, progress towards affordable pricing is being driven by the GAVI Alliance, with GAVI recently opening a window of support for eligible countries for the introduction of the HPV vaccine at either the national level or as a demonstration project.
Global Advocacy Message
Team-based, multidisciplinary treatment programs that include access to quality, affordable and effective cancer medicines and screening should also incorporate other cost-effective treatment solutions including radiotherapy which should be seen as an essential component of every country’s national cancer control plan.
All people should have access to proven effective multidisciplinary cancer services on equal terms, ensuring that cancer is diagnosed early when the chance of cure is greatest.
Truth: With the right strategies, a third of the most common cancers can be prevented.
Prevention is the most cost-effective and sustainable way of reducing the global cancer burden in the long-term.
- Global, regional and national policies and programs that promote healthy lifestyles can substantially reduce cancers that are caused by risk factors such as alcohol, unhealthy diet and physical inactivity. Improving diet, physical activity and maintaining a healthy body weight could prevent around a third of the most common cancers.
- Based on current trends, tobacco use is estimated to kill one billion people in the 21st century. Addressing tobacco use, which is linked to 71% of all lung cancer deaths, and accounts for at least 22% of all cancer deaths is therefore critical.
- For developing countries, the situation often goes beyond addressing behavioral change, with many countries facing a ‘double burden’ of exposures, the most common of which is cancer-causing infections. Chronic infections are estimated to cause approximately 16% of all cancers globally, with this figure rising to almost 23% in developing countries. Several of the most common cancers in developing countries such as liver, cervical and stomach cancers are associated with infections with hepatitis B virus (HBV), the human papillomavirus (HPV), and the bacterium Helicobacter pylori (H. pylori), respectively. As a consequence, the introduction of safe, effective and affordable vaccines should be implemented as part of national cancer control plans.
- Exposure to a wide range of environmental causes of cancer in our personal and professional lives, including exposure to indoor air pollution, radiation and excessive sunlight are also major preventable causes of cancer
Global Advocacy Message
Effective cancer prevention at the national level begins with a national cancer control plan (NCCP) that responds to a country’s cancer burden and cancer risk factor prevalence, and is designed to implement evidence-based resource- appropriate policies and programs that reduce the level of exposure to risk factors for cancer and strengthen the capacity of individuals to adopt healthy lifestyle choices.
Lack of information and awareness about cancer is a critical obstacle to effective cancer control and care in developing countries, especially for the detection of cancers at earlier and more treatable stages.
- In many developing countries, misconceptions about diagnosis and treatment and stigma associated with cancer can lead individuals to seek alternative care in place of standard treatment or to avoid care altogether. Understanding and responding to cultural beliefs and practices is essential.
- Although general cancer awareness in developing countries remains low, even among health professionals, levels of concern about cancer are high, and the public pays attention to messaging about the disease.
- Individuals, policy makers and healthcare professionals need to understand that many cancers can be prevented through appropriate lifestyle change, that cancer can often be cured, and that effective treatments are available, regardless of the resource setting.
- Recent experience with screening and vaccination programs in developing countries suggests that once people understand basic information about cancer and know how to access services they tend to come for the services. Equally important is the development of strategies to encourage help seeking behavior, including awareness and education of ways to recognise the signs and symptoms, and understanding that timely evaluation will increase the opportunities for cure.
Global Advocacy Message
The approach and scope of an effective cancer prevention programs takes into account not only economic factors but also social and cultural factors. Comprehensive prevention programs that include strategies to improve knowledge of cancer among communities, health professionals and policy makers, expand access to services and promote healthy foods and facilitate physical activity have, the greatest chance of success.
Disparities in cancer outcomes exist between the developed and developing world for most cancers.
- Patients whose cancers are curable in the developed world unnecessarily suffer and die due to a lack of awareness, resources and access to affordable, effective and quality cancer services that enable early diagnosis and appropriate treatment and care.
- The reality of cancer cure rates in children is reflective of the inexcusable inequities in global access to treatment and care. There are an estimated 160,000 newly diagnosed cases of childhood cancer worldwide each year with more than 70% of the world’s children with cancer lacking access to effective treatment. The result is an unacceptably low survival rate of ~10% in developing countries compared to ~90% in high-income countries.
- In many cases the largest and most unacceptable gap in cancer care is the lack of adequate palliative care and access to pain relief for much of the world’s population. A short list of medications can control pain for almost 90% of all people with cancer pain including children, yet millions of cancer patients have little to no access to adequate pain treatment.
Global Advocacy Message
Efficacious and cost-effective interventions must be made available in an equitable manner through cancer prevention, early detection and treatment delivered as part of national cancer control plans (NCCPs) that respond to the national cancer burden.
Access to effective, quality and affordable cancer services is a right of all individuals and should not be determined by where you live.