Today is World Hospice and Palliative Care Day (#WHPCD19).
The theme this year is: My care, my right.
What is Hospice and Palliative Care?
Palliative care is a fundamental part of healthcare – and a human right. It is about relieving suffering and pain at any point in a patient’s diagnosis from a life-limiting illness. When a patient and family receive palliative care services, the aim is to improve their quality of life, regardless of their age or stage of the disease.
The World Health Organization defines palliative care for adults and children as follows: “Palliative care is an approach that improves the quality of life of patients and their families facing problems associated with life-threatening illness, through the prevention and relief of suffering, the early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual.”
According to The Lancet Commission on Global Access to Palliative Care and Pain Relief: Each year, more than 25.5 million people die with serious physical and psychological suffering as a result of disease, injury or illness. This figure includes 2.5 million children. More than 80% of these cases are in low- and middle income countries, where access to immediate release morphine, an essential and inexpensive medicine to alleviate pain, as well any other type of palliative care, is severely lacking.
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.
We share the story of Betty as an example of the work of Msunduzi Hospice is providing Palliative care and some of the challenges we face on a daily basis.
Our patient, Betty (not her real name), was referred to Msunduzi Hospice by the local War Room.
Betty was diagnosed with meningioma in 2013 (a meningioma is a tumour that develops on the membranes that line the brain and the upper spinal cord). On our initial visit Betty’s condition was very poor. She was bed bound and nursed in nappies with no pain tablets or any other medication at all. No follow up appointment had been made for her to return to the hospital since 2013. Betty has four children. Two older sons, who have not been seen by the Hospice team, and two younger daughters. The two older sons are reported to be out of the house from early morning and do not take any responsibility for the care of their mother or the rest of the family. The younger daughter is the primary care giver and often misses school to provide this care. Hospice has informed the teachers of her home situation. She is in grade 11. The older daughter is epileptic and also needs care at home. For unknown reasons she is not able to walk. There is a seven year grand-child at home as well, she does attend school and is in Grade 2. A friend assists with the care of the family at home as needed. The family and the patient decided that she was no longer going to go to the clinic or hospital because she only comes back with ten (10) Panado tablets (paracetamol), yet her condition is poor.
This case was reported to and discussed with the Palliative Care Manager who then communicated with our networking contacts at a local hospital for advice and assistance. Through this networking an appointment was made for Betty for some tests to be conducted and assessment to be completed (scheduled for 4 September 2019).
One of the challenges facing the family and our care team was getting Betty to the hospital for this assessment. The family had no funds to hire a car to take Betty to the hospital and Betty was unable to sit upright in a taxi. Betty is the recipient of a grant and this is the only income for the household.
Additional care challenges were addressed by our social workers who were involved with Betty and her family in order to provide emotional support and counselling for the daughters as well as exploring options for placement for Betty. Our memory workers have been working with the younger daughter, helping her compile a memory box and memory book. The family is mocked severely by the local neighbourhood as everyone in the house is sick and there is a constant smell of urine.
Betty attended her appointment at the local hospital as Msunduzi Hospice had provided funds to hire a vehicle for her to use. The follow up admission for an MRI scan was missed because various traditional rituals needed to be conducted before she was admitted. This was on the understanding that if these rituals were not conducted she would not return home from the hospital. The Palliative Care Manager was able, in discussion with the local hospital, to have the admission postponed to a more suitable date for the family. Unfortunately a new appointment will need to be made when this happens and it may take some time to obtain another appointment for an MRI scan.
Our social worker continues to work closely with the older daughter who has epilepsy and is mostly immobile due to complications. Our social worker has managed to secure an appointment later in September for this daughter to see the doctor at the local clinic for an assessment. Following from this appointment with the doctor, the social worker has also managed to secure an appointment with the SASSA doctor in October for the possible commencement of a grant.
Why this story?
This story speaks to some of the complications involved in ensuring that patients are correctly diagnosed and then remain on treatment. In addition, as we approach World Hospice and Palliative Care Day in October, this story highlights the need to ensure that Palliative Care and UHC (Universal Health Care) are made more available within our country.
The referral was received by the local War Room which highlights the importance of local networking. Msunduzi Hospice attempts to ensure that care givers and nurses attend local War Rooms as often as possible (not compromising patient care). At the War Rooms discussions take place with relevant role players (Health, social development, political and other CBO’s) around the needs of that particular community.Referrals are made as necessary. Frequently these meetings are poorly organised and valuable time is then lost by our care team. However, they remain an important link between our care and the local community.
Once referred, an initial visit is conducted and the assessment made (as described above). The various issues that need attention are detailed, prioritised and our team begin to try and assist both the patient as well as the family. In this particular case these needs and the related challenges were significant. The lack of follow up after diagnosis and regular checks on Betty’s medical condition meant that the care was limited to start with. The additional complications of a daughter with epilepsy who also needed care and the primary care giver being a child who should be at school meant that the entire team needed to be involved. Msunduzi Hospice has limited resources and was unable to meet all the needs of this family. However, where we are not able to do so we make use of an extensive list of networking partners who assist in ensuring that the family and the patient receive the care that they need. The support of the local hospitals, clinics and social service agencies is acknowledged in this particular case.
The continued value of having, developing and maintaining networking relationships is also highlighted. The contacts developed at many of our local hospitals ensured that we were able to secure an appointment for Betty that would have provided us with the relevant investigations and we would then have been better able to provide care for her. The fact that she was unable to go for admission due to religious and/or cultural reasons was an unknown complication at the time. The value of palliative care is that we recognise the need to ensure that holistic care is provided to all our patients,. This holistic care includes cultural and spiritual care as indicated. We rely on the care team to offer this care as indicated. In this case these cultural needs delayed the assessment needed. This is often the case with many of our patients.
The access to care is an additional factor that complicates the care that our patients need. Betty was unable to sit in a taxi and unable to afford to hire a dedicated vehicle. Msunduzi Hospice was fortunate enough to be able to assist in providing these funds in this instance. But we are not always able to do so. Msunduzi Hospice does not have a suitable vehicle to transport bed bound patients to and from hospital (or other) appointments. All our vehicles require the patient to be able to sit up.
We wait now for a new appointment for the admission of Betty to the local hospital after which we should have a clearer picture of the care needed. In the meantime we do our best to ensure that Betty is pain free and her symptoms are managed. We work closely with the family (those that we can) and try to help them in meeting their particular needs as well. Additional nutritional support is provided as we have resources available.