Hundreds of hospice events are taking place across the globe for 10 October- World Hospice & Palliative Care Day – to highlight the role that palliative care plays in healthcare as well as the role that it is playing during the Covid-19 pandemic.
On 10th October, hospices and palliative care providers worldwide will be working together in honour of World Hospice and Palliative Care Day. Their shared message is simple yet important: “Palliative Care: it’s my care, my comfort”. The Worldwide Hospice Palliative Care Alliance (WHPCA), in collaboration with the World Health Organisation (WHO), will also be releasing the much anticipated second edition of the Global Atlas of Palliative Care, an influential report on the status of palliative care worldwide.
Amidst the Covid-19 pandemic, where the global death toll has recently reached over 1 million, palliative care has never been more important.
The Worldwide Hospice Palliative Care Alliance (WHPCA) Executive Director, Dr Stephen R. Connor says: “People from around the world who have been impacted by a life-limiting illness — either personally or by supporting a loved one — will be making their voices heard, asking policy makers to pay attention to prioritize palliative care policies and services. Further, people who have been standing in solidarity with them — local leaders, volunteers, advocates, clinicians — will be volunteering their time to amplify the public message. All the events are listed on the WHPCA website https://www.thewhpca.org/.”
Many people living in low-income or developing countries struggle to access palliative care. For this reason, the Hospice Palliative Care Association of South Africa (HPCA) and African Palliative Care Association (APCA) have joined the WHPCA in asserting that palliative care is a basic human right.
“Before Covid-19 the world, and especially Africa, was already burdened with unmet palliative care needs due to communicable and noncommunicable diseases. The emergence of Covid-19 and attending lockdowns and physical distancing measures reduced the opportunities for patients to interact with their providers”, says Dr Emmanuel Luyirika, Executive Director of the African Palliative Care Association. “In addition, many of those infected and with symptoms added to the palliative care burden. Some of the survivors have also continued to have emerging complications and sequelae. As we celebrate the WHPCD 2020, we need renewed focus on entrenching palliative care as part of UHC and health systems to support patients and their families better,”
In South Africa, hospices’ patients include some of the most vulnerable populations such as the elderly or patients with underlying chronic medical conditions – the very people who are most at risk for Covid-19. The patient profile of the hospices’ are comprised of approximately 50% HIV/AIDS patients, 25% are suffering from chronic diseases and 25% are suffering from cancer and TB. A remarkable 97% of the hospices’ services are provided in the patients’ homes.
Says Ewa Skowronska, CEO of the Hospice Palliative Care Association (HPCA): “Palliative care is often understood as only end of life care. This is not correct. It is essentially the desire to promote quality in life, dignity in death and support in bereavement for all living with a life-threatening illness. It is the provision of care for people whose life is threatened by a disease. Palliative care trained health workers can and are offering specialist support in areas that are critical during the Covid-19 pandemic such as pain and symptom management, communication with families, spiritual support and bereavement counselling. Families and patients often don’t know that they can and should expect holistic support when they are facing life-threatening diseases of any kind.”
Hospices deliver palliative care in three main ways: (1) home-based care for those that prefer to be at home (and are able to be), (2) hospice community centres (Day Care Centres) for those who are able to travel to central points and (3) at in-patient units for around-the-clock care.
Huyaam Samuels (22) of Cape Town, is a psychology and organisational psychology student at the University of Cape Town (UCT). She was diagnosed with Pseudoachondroplasia, a rare medical condition, in 2013. At the time she suffered from chronic pain and had to take daily medication.
Huyaam received assistance from Paedspal (Paediatric Palliative Care) and, although she no longer requires their assistance due to her significant improvement and careful daily health management, she is the Youth Ambassador for PatchSA (Palliative Treatment and Care for Children) and enjoys advocating for palliative care.
Says Huyaam, “I am extremely passionate about Children’s Palliative Care as I believe it is an essential and crucial part of living and giving children a chance to live life and not just exist. They – the children from all around the world – need a voice and to be given a chance to be heard. I am honoured to be that voice on behalf of all those who are unable to speak out. I can represent them passionately, honestly and wholeheartedly.”
Another patient example is Katrien de Beer (50), from Germiston. A mere two weeks after being diagnosed with stage 3 lung cancer, de Beer tested positive for Covid-19. In mid-March, she was placed in isolation in the ICU ward at the Netcare Union Hospital where she spent her days and nights on a ventilator.
“I still cannot believe what this year has brought to my doorstep,” she says. She describes herself as relatively healthy, but started coughing quite a bit in early March. “Treatment for sinus and bronchitis did not help, and it was only once further tests were done, that I was diagnosed with stage 3 lung cancer.” A few days before her second chemotherapy session, Katrien developed severe stomach cramps. It was suggested that she get tested for Covid-19 and it was at her second chemotherapy session that she received confirmation that she was positive. “All I remember, was that I was taken to the ICU via a wheelchair. I woke up three weeks later not knowing what had happened to me. I was told that I was on a ventilator, fighting for my life.”
Once she tested negative from the virus, she was moved to the Stepping Stone Hospice In-Patient Unit in New Market Park.
“Though I was very scared to come to hospice initially, I cannot tell you how dramatically my health and my mental state has improved since being admitted,” says Katrien.
Hospices are continuing to provide essential care and support for non-Covid19 patients. Nola George, the Assistant Manager at Zululand Hospice, reports that, “our clinical team continue to go out daily into the community, bravely doing their everyday work under circumstances that are anything but ordinary. Our team is continuing to provide home- based palliative care to our patients in towns and rural communities as well as in InPatient’s Units (IPU). We have increased our infection control measures both in the IPU Units and out in the field by screening our staff daily and doing in-service training regarding Covid-19 specific infection control, symptoms, and government updates which is then passed on by our staff to the communities they serve.”
For information on World Palliative Care Day, visit: https://www.thewhpca.org/world-hospice-and-palliative-care-day/about
For more information on HPCA, visit: www.hpca.co.za.
For more information on APCA, visit: https://www.africanpalliativecare.org
Note to editors
- For HPCA media queries, contact: Nicole Capper, Communications Consultant, HPCA, firstname.lastname@example.org or 073 148 3561.
- For APCA, contact: Wedzerai Chiyoka, Communications Consultant, African Palliative Care Association, email@example.com
HPCA’s mission is to promote quality in life, dignity in death and support in bereavement for all living with a life-threatening illness – which includes Covid-19. This entails providing medical care, psychosocial care, and spiritual support, as well as end-of-life support. Each hospice has a multidisciplinary health care team that includes a medical doctor, professional nurse, social worker and home-based carers. All hospice staff are trained in palliative care which aims to ensure a good quality of life for patients who have been diagnosed with life -limiting illnesses and to prevent and relieve unnecessary suffering. Care also extends to families, especially after their loved ones have died and as they process their grief.
Hospices provide holistic care to people affected by life-threatening diseases, regardless of whether they can afford to pay for this or not. To date only 18% of patients who need palliative care are able to access these services.
About the HPCA
The Hospice Palliative Care Association (HPCA) is a registered NPO in South Africa. Founded in 1987, the HPCA is a member organisation for South African hospices. As a national charity, the association champions and supports more than 108 member organisations that provide hospice services to more than 120,000 people per year.
There are nine regional hospice associations that are members of the Hospice Palliative Care Association, representing each province in the country. These are located in the Western Cape, Eastern Cape, Kwazulu-Natal, Free State, Northern Cape and the North-West province. The Association of Northern Hospices represents hospices in Gauteng, Limpopo and Mpumalanga.
About the APCA
African Palliative Care Association is a pan-African non-governmental organization working in over 25 African countries to ensure palliative care is widely understood, integrated into health systems at all levels, and underpinned by evidence in order to reduce pain and suffering across Africa.
APCA works in partnership with Ministries of Health, National Associations of Hospice & Palliative Care Organisations, academic institutions, providers and users of palliative care services, and has a membership of over 4,000 individuals and 2,000 organisations across Africa and beyond. It supports evidence based palliative and comprehensive chronic care through the African Palliative Care Research Network.
What is World Hospice and Palliative Care Day?
World Hospice and Palliative Care Day is a unified day of action to celebrate and support hospice and palliative care around the world. Voices for Hospices is a wave of concerts taking place on World Hospice and Palliative Care Day every two years.
When does World Hospice and Palliative Care Day take place?
World Hospice and Palliative Care Day takes place on the second Saturday of October every year and Voices for Hospices takes place on the same date every two years.
What are the aims of World Hospice and Palliative Care Day?
To share our vision to increase the availability of hospice and palliative care throughout the world by creating opportunities to speak out about the issues
To raise awareness and understanding of the needs – medical, social, practical, spiritual – of people living with a life limiting illness and their families
To raise funds to support and develop hospice and palliative care services around the world.
Who organises World Hospice and Palliative Care Day?
World Hospice and Palliative Care Day is organised by a committee of the Worldwide Hospice Palliative Care Alliance, a network of hospice and palliative care national and regional organisations that support the development of hospice and palliative care worldwide.
The development of World Hospice and Palliative Care Materials has been made possible in part by the generous support of the Joffe Charitable Trust.
About the global need for palliative care
- Worldwide, more than 25.7 million people die every year with serious health suffering that requires palliative care.
- The number of people who experience serious health-related suffering is much higher, with an additional 31.1 million people requiring some degree of palliative care outside of end-of-life care.
- Only about 12% of the overall need for palliative care is being met globally.
- More than 76% of these cases are in low- and middle-income countries, where access to immediate release oral morphine, an essential and inexpensive medicine to alleviate pain, as well any other type of palliative care, is severely lacking.
- Global policies restricting access to opioids mean that millions of people are denied access to medicines to relieve pain linked to illness or injury .
Worldwide Hospice Palliative Care Alliance
The Worldwide Hospice Palliative Care Alliance is a global action network focusing exclusively on hospice and palliative care development worldwide. With our 350 organisational members in over 100 countries, we provide a global voice with a vision to accelerate universal access to quality palliative care.
For more information visit www.thewhpca.org