During Lunch with Pippa Hudson on Cape Talk 567, in her Family Matters slot, Pippa discusses the importance of palliative care.
In conversation with Dr Margie Venter, a palliative care doctor and secretary of PALPRAC, they chat about what palliative care is, who might benefit from it and how the pandemic has releaved the gaps in palliative care services in South Africa.
Patients and their families facing serious illnesses often have to go it alone, and should be offered an extra layer of skilled, medical support called PALLIATIVE CARE. This should be the norm, from the time of diagnosis. This is not happening in the private healthcare sector. Why not and is there a solution?
As companions in care, palliative care teams are experts at helping with control of pain and other distressing symptoms, complex medical decision-making and offer emotional and spiritual support. However, most patients are not afforded the opportunity to have a palliative care team joining them on their journey with serious illness, even in the private sector. As it stands, patients are lucky to be receiving two weeks of care at home by a trained carer. Most, when their symptoms are uncontrolled or their condition deteriorates, need to go back into hospital. This is usually not the preferred choice of patients and families.
Advocacy for palliative care is growing globally, but medical schemes remain slow to act. The National Policy Framework and Strategy on Palliative Care was signed in South Africa in 2017. In the foreword of the document, Dr S.M. Dhlomo MEC for Health KwaZulu-Natal, states: “The World Health Assembly (WHA) Resolution reminds us that integrated palliative care is a basic human right, and that this right has been violated in our country, and in many low- and middle-income countries through neglect of palliative care as an integral part of the continuum of care.”
This policy, along with the fact the palliative care is considered part of Universal Health Coverage and is in the process of becoming a Prescribed Minimum Benefit (PMB) level of care in South Africa, implies that medical schemes can no longer shy away from reimbursing palliative care to patients with serious illness. They can also not expect providers to carry the burden of these costs. Robust, quality palliative care teams will only be established if they are financially sustainable. Schemes stand to benefit as patients are mostly able to be cared for at home, avoiding unnecessary and costly hospitalisations.
The way medical schemes reimburse palliative care providers for their services (if at all) remains one of the key barriers to palliative care access. In essence schemes pay a set rate for every consultation. This is called ‘fee-for-service’. This rate per consultation is typically very low, and does not take into account the long duration or complexity of such consultations. In addition, a lot of what these teams do is hold the space for patients and families: being available when there is a need, coordinating care by talking to other team members or doctors involved in the patient’s care, checking in proactively via whatsapp and so on. This is not time that can be billed for. And so, as a palliative care doctor is not seeing 4 or 5 patients an hour in their surgery, this way of reimbursement makes it virtually impossible for sustainable palliative care teams to exist.
PALPRAC has collaborated closely with an innovative new managed care organization, Alignd, to rethink this stalemate in our system and come up with something new. Alignd shares PALPRAC’s vision in improved access to optimal palliative care in South Africa. They do this by offering a comprehensive value-based business solution to medical schemes, called Alignd.Palliative. This product unlocks the financial gridlock for palliative care. A targeted palliative care benefit has been designed, based on international best practice, PALPRAC’s experience with their patients and Alignd’s expertise. Along with the benefit design, a value-based payment mechanism for formally trained palliative care multi-disciplinary teams has been established. This would mean that while healthcare providers are supported financially in delivering the service, patients are supported and empowered and costs are reduced without compromising quality.
Value-based care is concerned with the overarching goal of value for a patient. Under value-based care, incentives are aligned with outcomes. Healthcare providers are rewarded for helping patients improve their quality of life in an evidence-based way. Value-based care differs from a fee-for-service approach, in which providers are paid based on the amount of healthcare services they deliver. The “value” in value-based healthcare is derived from measuring health outcomes against the cost of delivering the outcomes.
Watch the video to find out more about value-based care, Alignd and their partners (including Palprac).
In this way, the Alignd.Palliative benefit is a seamless ‘plug and play’ solution for medical schemes. It will achieve the goals of quality palliative care to the patient, value to the medical scheme and sustainability to the provider.
If you think palliative care might be something to consider for yourself or a loved one, or if you have struggled with access to palliative care, please send us an email at firstname.lastname@example.org with your story. Patients and family’s voices are urgently needed to help shift the status quo.
At the start of the COVID 19 epidemic in South Africa I was ready to work wherever a palliative doctor was needed. However, as I started to understand more about the groups at risk of doing badly if infected, I had to have a rethink. I am 65 and feel perfectly healthy but have several risk factors in addition to age. The prospect of having a conversation with my work colleagues about what to decide caused great anxiety and the term moral distress applied to what I was struggling with.
An email came from Medical Brief announcing help for health care workers struggling with the impact of the pandemic on their mental health. Was it fair to ask for this support when I wasn’t at the clinical coal face?
I sent the application for a psychologist to contact me. Very soon, I had a reply and the offer of up to 4 zoom consultations. I have had a really helpful and professional therapist and the semi anonymity of Zoom has been a positive for me.
There are two contradictory messages for health care workers: either “put on your own oxygen mask first”, stay at home if you are at high risk or the health worker hero who is not daunted by fear. The moral distress of facing these choices has not gone away, but I have been helped to live with my decision.
I encourage all health care workers who are facing their own distress during the pandemic to recognise when they need help and to ask for it. There are very supportive and professional people willing and able to help.
My sincere thanks to the organisations and to the psychologists who have volunteered their professional services.
Dr Janet Stanford, Knysna Hospice
Mental Health Support for Healthcare Workers
Last week a communication was sent out, which requested volunteers to sign up to provide mental health support via the Healthcare Workers Care Network (HWCN). This programme is a collaboration of the South African Medical Association (SAMA), The South African Depression and Anxiety Group (SADAG), The South African Society of Psychiatrists (SASOP), The South African Society of Anaesthetics) and The Psychology Society of South Africa (PsySSA).
The purpose of this programme is to provide mental health support to all healthcare professionals requiring care during this challenging time.
Should you require such support, please register here
“Kindness, humanity, and respect—the core values of medical professionalism—are too often being overlooked in the time pressured culture of modern health care.” Harvey Chochinov
As the world has been thrown into a state of emergency with the COVID-19 pandemic, scenes never expected before are being witnessed by humanity. Healthcare workers and strategists scramble to generate strategies in keeping with the pace of the novel Corona virus to protect humanity. In South Africa, we learn from the course and trajectory of COVID-19 in the countries that have preceded us in acquiring the infection, but can we prepare adequately considering our socio-economic climate? With our lack of basic amenities like food, shelter, and adequate water supplies for safe hand washing and a high rate of HIV and Tuberculosis, we have to prepare for the worst medically, whilst socioeconomic systems are proceeding to correct these social inequalities. For the minority of those that develop COVID-19, the disease is serious (15%) to life-threatening (5%). However, if the infection rate increases rapidly, this will overwhelm our already burdened and under-resourced healthcare system.
How is palliative care relevant during the Covid pandemic?
Alongside life-saving management, palliative care becomes essential at this time of COVID-19 to support and improve the quality of life of patients (and their families) with serious illness, to alleviate suffering and uphold their dignity through active compassionate interventions until the end-of-life. Palliative care intends not to hasten or prolong death, yet alongside standard care we may improve survival by relieving symptom- and psycho-existential distress. As the community transmission increases in SA, we also have a responsibility to protect our vulnerable palliative care patients with advanced disease in the community who are COVID-19 negative with education and PPEs. Community based palliative care also places the healthcare worker at risk, and an unsupported healthcare worker can offer little support to another.
What does dignity mean?
Dignity is an unconditional inherent worth possessed by ALL living beings – intrinsic dignity.
Dignity is a core value in palliative care. A basic principle of palliative care is to help the patient live and die with dignity, in conjunction with symptom control, and psychosocial and spiritual well-being in order to achieve the goals of optimizing quality of life. Dignity is an unconditional inherent worth possessed by ALL living beings – intrinsic dignity. Yet, there is a labile extrinsic attributed component: how patients view themselves and how they are viewed by others. With COVID-19, people are feeling unsafe and anxiety levels are high and this has affected their sense of worth/esteem. It is this extrinsic component of dignity that fluctuates and needs to be considered. There are a number of practical considerations that can threaten/improve the dignity of patients at this time of COVID-19 and yet there are simple basic compassionate measures that can be implemented to counter these threats.
Lack of basic human needs such as food, running water, shelter, money, transport to medical facilities and access to basic medication can undermine the dignity of the majority of our patients. The lockdown has bought time for the government to strive to provide such facilities to minimize the extent of the assault of the lack of these amenities on the dignity of South Africans.
Alongside treatment-focused interventions for those who qualify, the frequent assessment and vigilant management of symptom distress such as fever, breathlessness, anxiety, and pain are vital to maintain the dignity of all categories of patients.
Availability of medicines (be it enteral or parenteral) to alleviate symptom distress especially opioids and benzodiazepines is essential for the effective provision of dignified palliative care.
PPEs are also essential to protect our COVID negative patients, and the families caring for COVID positive patients at home. A safe family means a happy patient.
If our healthcare system is overwhelmed by the COVID-19 disease burden, triage may become necessary to determine who is to receive critical care or supportive care. In palliative medicine, death is considered a normal phase of life. It is how we approach and support the dying patient at this time that becomes paramount. For those patients who are for supportive care, all measures must be taken so that they receive compassionate comfort care, and are free from physical and psycho-existential distress until they die.
Psychosocial distress is a major factor that diminishes dignity in the dying. Patients are afraid (of death, loss of function, loss of role, abandonment by medical staff and family, symptom distress, concern for loved ones, being a burden on others etc.) and these fears need to be allayed.
There is the potential danger of the COVID positive patient being stigmatised and disrespected.
Even in this time of potential chaos and time constraints, psychosocial and spiritual needs should be identified, explored, and honoured to the best of our ability with a supportive empathetic listeneing and referral for counselling.
Honest, clear, compassionate communication which begins with the Advanced Care Planning (see attached) gives the patient autonomy and grace in dying. This conversation can begin with patients at risk of getting serious illness so their wishes can be respected – this also affords family members peace of mind when critical decisions need to be made.
COVID-19 poses an added challenge to dignity in palliative care as isolation is mandatory, thus dying patients suffer alone, without the support of touch or the company of their loved ones. This may make them feel more vulnerable as their loved ones are not present to support and advocate for their needs. However may be possible, safe means need to be explored to help families make contact with their dying loved one. No one should suffer and die alone. The innovative use of communication technology (e.g. Whatsapp/Video calling, tablets, Zoom or Skype) can help people maintain contact with loved ones, and thus support their grief and bereavement. They need to say goodbye and bring closure for their peace of mind.
Knowing that their loved ones are also supported to bring closure can also bring relief to those that are dying.
Due to social isolation families can experience complicated grief from not being able to support or comfort their loved ones in their last days. It is difficult for them to experience closure. Thus bridging this gap in communication is merciful and it is important to offer best compassionate care to both the patient and the family unit.
An interdisciplinary approach that includes community counsellors, social workers, psychologists and chaplains are essential to relieve the burden on dignity at the time of COVID
Living in our culturally diverse Rainbow Nation, death is an important phase of life and entails many rituals/traditions, customary to the patient’s culture/religion. This is not to be slighted with COVID-19 as it may result in aftermath for the families.
Hospital and community chaplains and social workers should pay an active role in ensuring there is open honest communication and understanding of relevant family members (especially about the handling of the bodies).
This spiritual care will build trust and cooperation.
Families should be supported so that fundamental aspects of traditions that bring meaning are respected whilst maintaining infection control and safety spiritual care.
Care of the Caregiver:
If symptom distress is not attended to adequately and there is suffering, or with triage and rationing of medical equipment, there can be mental trauma experienced by patients, families/caregivers, and health care providers.
Caregivers and Healthcare providers need to have support structures in place and need to debrief as compassion fatigue, low morale and dissociation can set it in if not monitored.
A resilient dignified family caregiver or healthcare worker ensures dignity to the patient.
What do healthcare professionals need to remember?
Healthcare professionals have an influence in the area of the extrinsic sources of dignity listed above, and can enhance the dignity of ALL patients at the time of COVID-19 by providing respectful compassionate care, in attending to all domains of care of patients, thus providing total care – There is never nothing we can do for anyone! Palliative care is active compassionate care!
As Broyard said, the separation of humanity and compassion from healthcare delivery requires that “treatment of disease takes its proper place in the larger problem of care of the patient”, and COVID-19 has made this statement most relevant.
There is never nothing we can do for anyone!