Why palliative and hospice care matters

03 October 2013 | Graeme Wilkinson | Opinion

Significant gains have been made in the fight against HIV/AIDS and other chronic disease through palliative and hospice care.

Leratong Hospice staff in an artistic frame of mind

Palliative care is a special kind of care for people with curable and incurable life-threatening diseases at any stage; this includes people suffering from advanced cancer, HIV and AIDS, as well as chronic conditions such as tuberculosis (TB), heart failure, liver or kidney disease and stroke. It is not simply about caring for patients with cancer (the traditional view) or AIDS (a contemporary South African view), but promotes quality patient outcomes in the face of life-threatening conditions.

The palliative care approach is imperative as it aims to improve the quality of life of patients and their families who face the problems associated with chronic illness. Palliative care preserves dignity. Dignity in life, and in death. Anyone who has nursed a terminally ill patient through excruciating pain will attest that palliative care is a fundamental human right!

Palliative care assists people in many ways as it helps people with incurable illness and their families to live more comfortable, active and hopeful lives, it works to prevent and treat pain and distressing symptoms. It is key in providing care for the whole person, focusing on the physical, emotional, social and spiritual needs of the patient and family, and it is more effective when there is teamwork involving the greater community in caregiving and support.

According to statistics recently released by the Worldwide Palliative Care Alliance, a majority of countries do not have any identified hospice and palliative care services and 80% of people globally lack adequate access to medication for treatment of moderate to severe pain.

We at Tshikululu identified this form of care as being effective and essential in the face of the HIV pandemic.  Advising the FNB Fund back in 2006 specifically, and subsequently the Anglo American Chairman’s Fund and a number of other donors, we identified that significant public health outcomes could be achieved by directing assistance to the hospice movement generally, and through the Hospice Palliative Care Association of South Africa (HPCA) specifically.

Through its 153 member hospices, the HPCA network cared for 82 681 people in 2012/13, and 98% of these patients were cared for by home-based carers. Home-based carers are a special kind of person – real living angels – who, for little to no financial reward, walk kilometres daily, through all sorts of weather and terrain, to provide quality care to their patients: in their homes, in their communities. The (often retired) professional palliative care nurses who support these home-based carers are really the equivalent of our modern-day superhero!

Bringing quality palliative care to people’s homes inevitably involves the provision of primary health care interventions, too. While assisting a co-infected HIV/TB patient to take her daily medication, the home-based carer also educates the family on household hygiene, ventilation and infection control. It is thus incorrect to view palliative care as the exclusive preserve of tertiary health care.

The HPCA is doing a commendable job in strengthening the palliative care and hospice sphere. It has enhanced its scope to cover various projects, such as the setting and defining of standards of palliative care, palliative care training courses, and the designing of specialised protocols in palliative care for older people and for those in correctional facilities, to highlight a few. The HPCA is working closely with its member hospices to ensure that they are not only aligned to the bourgeoning National Health Insurance (NHI), but offer responsive and constructive energies to the re-engineering of the public primary health care system currently being championed by the national Department of Health in South Africa.

The HPCA also plays a critically constructive role in building the capacity of the sector. With support from the De Beers Cullinan Gain Share Scheme, for example, the HPCA has provided structured and developmental assistance to community-based organisations (CBOs) around the Cullinan district in Tshwane. The anticipated capacity-building outcomes include organisational management skills development and skills transfer on a clearly defined set of areas critical to the running of an NGO. In doing so, these CBOs are being empowered to offer top-quality patient care, while being able to command donor support on their own.

The international health community has long recognised the importance of palliative and hospice care. As such, there is an annual international day of commemoration: World Hospice and Palliative Care Day on 12 October.  This is a unified day of action to celebrate and support hospice and palliative care around the world. The aims of the day are 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
  • Raise awareness and understanding of the needs – medical, social, practical, spiritual – of people living with a life-limiting illness, and the needs of their families
  • Raise funds to support and develop hospice and palliative care services around the world

The theme for World Hospice and Palliative Care Day 2013 is “Achieving universal coverage of palliative care – dispelling the myths”. I would like to challenge people to become involved in World Hospice and Palliative Care Day this year. Your support might include visiting your local hospice, or actively raising awareness and funds for the hospice and palliative care services in your area.

May we all remember that caregivers, families and patients require our help, support and lots of encouragement.