Tag: palliative care

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South Africa’s Palliative Care Standards Earn Global Recognition

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The 5th edition of the Standards for Palliative Healthcare Services has achieved a major milestone: it has secured accreditation from the International Society for Quality in Health Care’s External Evaluation Association (IEEA).

This international endorsement reaffirms the commitment of the Association of Palliative Care Centres (APCC) to deliver world-class palliative care.

As the only internationally accredited framework guiding palliative care institutions in South Africa, these Standards play a crucial role in ensuring quality, safety, and compassionate service delivery. Developed through a long-standing partnership between the Association of Palliative Care Centres (APCC) and COHSASA, the Standards have been shaping palliative care excellence since 2005.

The 5th edition—available for free at APCC’s website—features:

 ✔A refined presentation structure for easier navigation

 ✔Removal of outdated or duplicated criteria to streamline compliance

✔Changes in terms of new legislation, particularly as it relates to the POPI act

✔ New essential elements to enhance care quality

Why accreditation matters

According to Warren Oxford-Huggett, National Accreditation Manager for the APCC, earning accreditation requires time, energy and commitment, but the rewards are far-reaching.

He highlights three key benefits:

·       Optimal Community Engagement – Accredited palliative service providers gain increased community trust and support, strengthening relationships between institutions, families, and caregivers. “From a patient perspective, knowing that the organisation that is providing care is accredited puts your mind at ease.” 

·       Better Organisational Performance – Self assessments and internal peer reviews drive higher efficiency, sustainability, credibility and overall service quality. It revolves around the framework that COHSASA sets up.

·       A Culture of Excellence – Accreditation fosters a mindset of continuous improvement, embedding best practices within healthcare teams.

Oxford-Huggett also has a role to encourage more palliative care organisations to join APCC’s current 68-member network, particularly as demand grows for structured palliative care in elderly care facilities. Of the five latest institutions that are currently in the process of joining the APCC, four of them are facilities for the aged.

“The market for new APCC members is increasingly swinging to more aged care facilities. What that will mean in terms of cost of care remains to be seen”, says Oxford-Huggett. “Many elderly care institutions advertise or market palliative care, but seldom is anyone adequately trained. It’s early days but we are looking at developing a collaborative model to help these frail care facilities implement structured, high-quality care at an affordable cost. With rising living expenses and an aging population, we must ensure end-of-life care remains accessible without imposing financial strain.”

Mentorship for success

To assist APCC members in meeting these high standards, APCC offers a structured mentorship programme, led by Oxford-Huggett. This initiative guides members through the compliance process, preparing them for COHSASA’s external review and international accreditation.

APCC member, Helderberg Hospice, based in Somerset West, has just achieved their 6th accreditation, with their first accreditation achieved in May 2006.  Robert de Wet, the CEO of Helderberg Hospice comments: “In addition to focusing on clinical compliance, the accreditation process assesses criteria across the entire organisation, including areas relating to governance, fundraising, administration, and human resources. Subjecting your organisation to an intensive external accreditation process is important as it serves to both affirm the positive aspects of the work we do and simultaneously makes us aware of areas in which we require more focus.” They achieved a 97% score.

Setting the Standard for Palliative Care

Since 2005, 95 APCC members have undergone COHSASA accreditation, with 117 accreditation decisions issued—ranging from full accreditation to graded recognition.

Palliative care focuses on improving quality of life for patients with serious illnesses such as cancer, HIV/AIDS and TB as well as conditions such as COPD, heart and organ failure.  The APCC philosophy of palliative care is the activeholistic care of patients who have received a life-threatening diagnosis. The control of pain, of other symptoms and support for psychosocial and spiritual needs is paramount.

APCC members report that around 90% of palliative care efforts take place in patients’ homes, extending support to loved ones, from diagnosis to after bereavement.

Jacqui Stewart, CEO of COHSASA, affirms:“The international accreditation of this 5th edition confirms that the APCC standards align with global best practices. For over 20 years, the APCC and COHSASA have collaborated to ensure that South Africa’s palliative care remains internationally recognised. COHSASA is committed to driving ongoing improvements in palliative care services.”

The 5th Edition of the Standards for Palliative Healthcare Services is available free of charge from the APCC website: https://apcc.org.za/standards-for-palliative-healthcare-services/

For mentorship details, contact warren@apcc.org.za.

For membership details, visit: Become a Member.

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Assessing Pain and Anxiety of Nursing Home Residents Unable to Speak

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As many as half of nursing home residents are cognitively impaired and may be unable to communicate symptoms such as pain or anxiety to the staff and clinicians caring for them. Therefore, information needed for the evaluation of symptoms and subsequent treatment decisions typically does not reliably exist in nursing home electronic health records (EHRs).

A new paper published in the International Journal of Geriatric Psychiatry reports on the novel adaptation of a commonly used symptom assessment instrument to more comprehensively acquire this difficult-to-obtain data with the ultimate goal of enabling knowledge-based expansion of palliative care services in nursing homes to address residents’ symptoms.

In the paper, part of the large, multi-state, multi-facility Utilizing Palliative Leaders in Facilities to Transform care for people with Alzheimer’s Disease (UPLIFT-AD) study researchers, including Regenstrief Institute, the Indiana University School of Medicine and the University of Maryland School of Social Work faculty, describe how they revamped and subsequently validated a symptom assessment tool used worldwide. The UPLIFT-AD researchers modified the instrument, originally designed for reporting by family members of individuals with dementia following their death, to enable reporting on the symptoms of current residents living with moderate to severe dementia by nursing home staff as well as family.

Led by Kathleen T. Unroe, MD, MHA, and John G. Cagle, PhD, the UPLIFT-AD team reports in the peer-reviewed paper that the tool they enhanced reliably addressed physical and emotional distress as well as well-being and symptoms that are precursors to end of life. This validation was critical as the researchers develop guidance for expansion of symptom recognition and management in any nursing home. Employing instruments used in other studies helps researchers to directly compare findings.

Dr. Unroe, Dr. Cagle and colleagues, including Wanzhu Tu, PhD, of the Regenstrief Institute and the IU School of Medicine, are in the late stages of the UPLIFT-AD clinical trial to enhance quality of care individuals with dementia by building capacity for palliative care within nursing homes.

“People receive care in nursing homes because they have significant needs – support for activities of daily living – as well as for complex, serious and multiple chronic conditions. But measuring symptoms of residents, especially those who are cognitively impaired, to address these needs is challenging,” said paper senior author Dr. Unroe, a Regenstrief Institute research scientist and an IU School of Medicine professor of medicine. “In my two decades of working as a clinician in nursing homes as well as a researcher, I have seen that often the information on symptoms that we want isn’t available consistently in the data that’s already collected or it isn’t collected at the frequency that we need to measure the impact of programs and approaches. And the gold standard for knowing if someone has a symptom, for example, if someone has pain or anxiety, to ask that person directly to assess the symptom, isn’t always possible for cognitively impaired residents. That’s why we took steps to validate a commonly used instrument in a wider population – individuals currently living with cognitive impairment – and added additional needed data points.

“While hospice care is typically available, there is widespread recognition that broader palliative care is needed in nursing homes. But there is no roadmap for how to provide it well. We hope that when we have our final results in 2026, UPLIFT-AD will prove to be a replicable model for implementing this much needed type of care.”

Source: Regenstrief Institute

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Terminally Ill Patients Need More than Prayer from Spiritual Leaders

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A study conducted among advanced cancer patients in Soweto has found that most patients who received palliative care and are at the end of life, have spiritual needs beyond regular prayers from spiritual leaders. Furthermore, patients who received religious or spiritual care had less physical pain, used less morphine and had higher odds of dying where they wish than those who did not.

The study involving 233 participants was conducted by a team of local and international experts led by Wits researchers.

Lead researcher Dr Mpho Ratshikana-Moloko from the Centre for Palliative Care in the Faculty of Health Sciences at Wits University says that previous research has shown that religion and spirituality are important to most patients facing life-threatening illnesses. However, this study probed further.

Using the African Palliative Care Association Palliative Outcome Scale, the research confirmed previous international findings that nearly 98% of the participants had a religious or spiritual need.

The most common spiritual need expressed by patients in Soweto was “seeking a closer connection with their God” and “forgiveness for sins”, says Ratshikana-Moloko. This finding is of significance because it calls on faith leaders to provide relevant support that responds to the needs of patients. This research-led intervention empowers leaders to move beyond prayer, explains Ratshikana-Moloko.

“This is the first study to assess the spiritual and religious needs, and religious and spirituality care provided to advanced cancer patients who received palliative care in Soweto,” says Ratshikana-Moloko.

Since the study was concluded in 2018, Wits University has developed a course in Spiritual and Chaplaincy in Palliative Care. The first cohort of faith leaders from all religious backgrounds completed in September 2023.

Palliative care to increase

Palliative care is one of the key pillars in illness management among terminally ill patients who are judged by a specialist physician as unlikely to benefit from curative-intent therapy. Often, patients are unlikely to survive beyond six months.

The South African National Policy Framework and Strategy for Palliative Care (2017–2022) incorporates spirituality into health care. However, palliative care services in South and southern Africa and elsewhere, rarely address these needs, despite available policies, guidelines and evidence.

“We have to implement what we know. The integration of spiritual care within the clinical care setting is recommended,” Ratshikana-Moloko.

South Africa faces a heavy burden of communicable and non-communicable diseases. One in six deaths globally is due to cancer, and cancer diagnoses are expected to increase by 70% in the next two decades, especially in low- and middle-income countries.

“Failure to identify and address the religious and spiritual needs of terminally-ill patients may increase distress and suffering,” Ratshikana-Moloko.

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Hospice Palliative Care Association Rebrands as the Association of Palliative Care Centres

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As of the 1st of September 2023, the Hospice Palliative Care Association (HPCA) is known as the Association of Palliative Care Centres (APCC).

“This rebranding is not just a visual change,” says Ewa Skowronska, CEO of the APCC. “It is an important message to all medical professionals and the public that our members (many of whom still refer to themselves as hospices) offer quality, specialised and expert palliative care services. Too many people equate hospice with end-of-life only and many medical professionals refer very late. This leads to thousands of patients, and their loved ones, missing out on the holistic support that palliative care provides – support that, ideally, should be from diagnosis of a life-threatening illness and not solely in the last few days of life.”

The rebrand includes a new logo element that reflects that palliative care can be provided alongside curative treatments and into end-of-life care, including bereavement support (if needed). 

“Our members adhere to the Standards for Palliative Healthcare Services, 4th edition, 2020 approved by the Council for Health Service Accreditation of South Africa (COHSASA) and the International Society for Quality in Health Care (ISQua),” says Leigh Meinert, Advocacy and Operations Manager of APCC. “This is important as sometimes there is a perception that our members are only servicing patients who do not have private healthcare support and might not be at the same level as private organisations. In reality, they have decades of palliative care experience, and compliance with these Standards ensures an ongoing level of excellence.”

As much as 90% of APCC member’s services are provided to the patient in the comfort of their own home. The patient’s loved ones are also supported by way of an interdisciplinary team. Such a team typically consists of a medical doctor, nurse, social worker, and home-based carers who can work alongside the patient’s healthcare professional and support quality of life.

Palliative care covers conditions such as HIV/AIDS, drug-resistant TB, chronic respiratory diseases, cardiovascular and neuromuscular diseases, MND and more. “Both adults and children are catered for,” says Meinert. “While patients can move in and out of a palliative care service, they may remain beneficiaries of the services for as long as they (or their loved ones) need or wish to.  Patients may be discharged from the service if they are doing well and able to function independently.  This is always negotiated between the patient, family, and members of the care team. We encourage patients to engage with an APCC member from the point of diagnosis as this helps to dispel fears and provides insight into the holistic services that can be offered. We believe that all patients have benefitted from an improved quality of life through the supportive care received from APCC members.”

“APCC has a cloud-based patient care monitoring, evaluation and reporting system able to report in detail on interventions given to any patient,” says Skowronska. “Our members are comfortable working alongside the primary clinician or specialist.  They can provide a supportive extension of care to the patient and their loved ones and, in most cases, the APCC members inter-disciplinary teams collaborate and work alongside the referring doctors who are treating the patient. They also provide supportive care to the patient’s loved ones. This may include advanced healthcare planning, as well as psychosocial and spiritual support.” 

“Our palliative care definition says it all,” concludes Meinert. “Palliative care is the physical, psychological, social and spiritual care provided by an interdisciplinary team of experts to anyone with a life-threatening illness and their loved ones. Care is offered from the point of diagnosis and extends to bereavement support if needed. Over 90% of the care that APCC members provide is home-based with a focus on promoting quality of life.

We sincerely hope that this rebranding results in more people receiving the support that they so desperately need during some of the most difficult times in a person’s life.”

For more info, visit www.apcc.org.za