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Busting Palliative Care Myths

April 19, 2022 | Press Releases

Hospice Week takes place this year from 1 – 7 May 2022. Every year, this week focuses on highlighting the role that hospices play in the medical and healthcare landscape. In 2022, this conversation is more important than ever before as the Covid-19 pandemic not only highlighted the topic of death, but also highlighted that palliative care is an oft-misunderstood service – that it is considered to be “end-of-life” care, and not the holistic service that it actually is for anyone diagnosed with a life-threatening illness. This results in individuals potentially missing the vital opportunity to “live before dying” post the diagnosis of a condition or disease that threatens their life.

Says Ewa Skowronska, CEO of the Hospice Palliative Care Association (HPCA): “Our hospice members provide holistic care to anyone with a life-threatening illness, and it starts with diagnosis. From that point, our members are able to offer psychological, medical, emotional and spiritual care. Not only to the affected person, but also to their loved ones.”

Says Leigh Meinert, Advocacy & Operations Manager of the HPCA: “Unfortunately, it is often reported to us that patients are frequently referred to members very late in their disease progression. This essentially deprives them of the quality of life that might be possible, whilst facing a life-threatening condition.”

There are many misconceptions about hospice and what it offers. According to Sharon Van Niekerk, Facility manager at Tygerberg Hospice Intermediate Care facility (IMC): “One of our patients shared that, before he arrived at Tygerberg Hospice, he had no idea what a hospice was or what they could offer him. Whilst his injuries are severe and life limiting, the life he knew has completely changed. We are determined to provide him with a dignified life so that he can manage his goals and live as ‘normal’ as possible. Our care encompasses rehabilitation, psychosocial support, and spiritual and nursing care.”

This disconnect between what palliative care actually is, and what it is understood to be, also extends to the medical profession. Says Skowronska: “The holistic nature of palliative means that medical professionals can continue to interact with their patient, with support from a multi-disciplinary team of experts that can extend to social workers and so much more. Our members work hand-in-hand with the patient’s existing medical team to provide extensive support from a palliative perspective. This care is often home-based care and includes support to the patient’s loved ones.”

One such patient example is Ken. Diagnosed with cancer, Ken expected to live with the disease for a significant amount of time. Until it entered his brain. Ken’s wife writes: “As a family, we were caught off guard and had no clue about how to care for him.  He didn’t want to die in hospital, but his oncologist was of the opinion that he needed hospital care.  He could no longer walk or communicate and became paralyzed on his right side. I was crazy with worry, grief, panic and since we had only just moved to White River, I had no idea where to even start with Ken’s palliative care.  I reached out to Hospice White River to see if they could help in some small way. I did not expect the level of help and care that followed.

They quickly sourced all sorts of equipment for us so that we could effectively care for Ken at home.  This was an absolute necessity as without it, Ken would have had to stay in hospital.  They also came to our house, sometimes twice a day to chat with Ken and I, help me to change sheets and bathe Ken, turn him and keep his pressure wounds clean.  These are all monumental challenges that face a family who is looking after their loved one at home, especially when one is frozen with anxiety and sadness. They not only guided me in the practical aspects of looking after Ken, but they also very calmly and quietly lifted our emotional spirits, spoke to Ken, and calmed him.”

“The message that palliative care is available and multi-disciplinary needs to reach both the general public and the medical and healthcare sectors. There needs to be an understanding that quality palliative care is critical for the wellbeing of a patient and their loved ones,” says Meinert. “It is also critical in terms of providing the best possible medical care, which sometimes has a curative element. Each hospice has a multidisciplinary health care team that includes a medical doctor, professional nurse, social worker and home-based carers. This team works with the patient’s own specialist or oncologist to ensure a good quality of life for patients who have been diagnosed with life-limiting illnesses as well as to prevent and relieve unnecessary suffering.”

This multi-disciplinary, and sometimes curative nature of palliative care is illustrated by a HospiceWits patient story. Chris Hani Baragwaneth Hospital referred ‘Portia’ to HospiceWits. On admission to hospice care she was emaciated, bedridden, very weak and her hands were always shaking. “The patient had misconceptions about palliative care, which were addressed by the care team,” says Jacqui Kaye, CEO of Hospice Wits. “The care goal and scope were clarified with ‘Portia’. She was actively involved in all aspects of care, including care planning and setting holistic goals of care, and also involved in the decision-making process surrounding her healthcare. As a result, she received comprehensive health care that met her individual needs. We provided total nursing care, managing symptoms, controlling pain, and ensuring the patient’s comfort. ‘Portia’ was given bed baths, massages, and passive exercises, as well as assistance with meals and medication administration. The social worker also provided psychosocial support.”

For Portia, palliative care resulted in her regaining the use of her limbs. She is now able to drive herself, cook and clean the house. Palliative care intervention improved Portia’s quality of life.

“Ultimately, palliative care is about quality of life, dignity in death and bereavement support if needed. It’s about support to live with dying,” concludes Skowronska.

To read any of the hospice stories featured, for more information on palliative care or to find a hospice in your area, visit: www.hpca.co.za

 

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 around 89 member organisations that provide hospice services to approximately 100,000 people per year. HPCA’s member hospices across South Africa care for patients with a variety of life-threatening diseases, predominantly in the comfort of their own homes.

About hospice

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.