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PALPRAC PalliCHAT: Dignity experience of Patients with advanced disease – a South African Perspective.

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Join Dr. Raksha Balbadhur MBChB (UCT) DA (SA) Dip PallMed MPhil Pallmed as we discuss understanding the wholistic Dignity experience of Patients with advanced disease – from a South African Perspective

Medical doctor of 21yrs with MPhil in Palliative Medicine UCT, with a master’s degree in understanding the dignity experience and exploring the impact of dignity therapy and guided imagery on the dignity experience of patients with advanced disease – a SA perspective.

PALPRAC members can attend for FREE of charge, and PALPRAC Guests are charged R50/session to attend. To qualify for a CPD Certificate, participants must be present for 70% of the webinar.

If you would like to join PALPRAC as a Member, please visit our PALPRAC website, where you will find more information about our membership categories, member benefits, valuable resources, and upcoming events you can attend for free. If you’d like to JOIN PALPRAC as a member, please visit https://bit.ly/3lmRtqV or contact us at info@palprac.org or feel free to send a direct message on 📲WhatsApp +27827738467. 

PALPRAC PalliCHATs till October 2022 are available PALRPAC Member portal or directly from our website – https://bit.ly/37gp6HI

Copy of SwanSong Logo Full colour (Medium)

Swansong: South Africa’s first online living-will service launches to support the need for advance care planning 

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Digital living-will start-up, Swansong, has recently launched in order to make the difficult conversations about illness, facing death, and planning a good life to the end easier.

First-to-market in South Africa, Swansong offers virtual, guided end-of-life conversations and planning with expert counsellors. Over two one-hour online video sessions, a counsellor helps a client discover, clarify and communicate what is important to them towards the end of their life, documenting all of it into a living will or advance care plan.

The Swansong Advance Care Plan is legally sound, and contains the client’s decisions around future medical care (the treatment they are prepared to receive and where they want to die – hospital, hospice or home), and the nomination of their healthcare proxy (someone who can legally make healthcare decisions on the client’s behalf if they can’t). It’s a comprehensive, personalised guide that gives peace of mind to the client, and their loved ones. It can also protect clients and their families from panicked end-of-life decisions that waste financial resources.

Swansong is the brainchild of South African women, Dr Linda Holding, a palliative care-trained doctor with 20 years of clinical risk management experience, and Shivani Ranchod, a healthcare actuary and academic.

“The recent COVID pandemic has shown us that being prepared for your death is more than simply having a Will in place which details how your finances and property will be split up. Too many people were dying in a way that they wouldn’t choose for themselves,” says Holding.

One of the most valuable gifts someone can offer to those they love is to embrace their mortality and be specific about the care they do or do not want to receive, and how they would prefer to die. By planning their end-of-life wishes ahead, they’ll unburden their family from making tough decisions when the time comes someday.

Says Holding: “To all healthcare practitioners caring for the elderly or ill, we’d say you have a critical role to play in nudging your patients to think through their individual end-of-life wishes. Your patients should certainly have an advance care plan in place. Perhaps you are comfortable to have this discussion with your patients, and ensure their wishes are documented and easily accessible. However, perhaps with the pressures of running a busy practice or care home, you may not be broaching this difficult topic with your patients as often as you like, and not having the conversation in sufficient detail, nor ensuring that it is captured in a legally sound document.

“This is where Swansong can assist, by having the difficult conversations with your patients about illness, facing death, and planning a good life to the end. We have specialist counsellors who facilitate the advance care planning process.”

Swansong Project Lead, Janine Rauch, says that international studies show that *92% of us say that talking about our end-of-life values is important, yet only 32% of us have actually done so. “It’s a challenging topic to contemplate, let alone plan and discuss,” says Rauch. “Working through and documenting an advance care plan with Swansong now, especially at an older age, is a good idea. Accidents happen. Illness and surgeries increase our risk of needing an advance care plan.

“Swansong wants to help everyone think about, talk about and document their wishes for care through the end of life, so that those wishes can be understood and respected. And we know that families of people who have had a written advance care plan in place are left feeling less guilty, uncertain and bereaved after a death. If doctors and care homes routinely invite Swansong to do planning with each patient and resident, those advance care plans will reduce stress, for everyone, in the end,” says Rauch.

*Source: The Conversation Project National Survey, 2018

For more information: www.swansong.life

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PC matters to you

Does your healthcare team know what matters most to you?

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Dr. Margie Venter PALPRAC Clinical Director enlightens us on how to inform your healthcare team on what matters most to you when facing a serious illness.

Going on any journey means planning ahead. Also a cancer journey. Planning for what’s likely, but also for the what-ifs. I’ve often thought this to be a much more useful cancer metaphor, as opposed to the war one. Wars imply winners and losers, and often destruction in its wake. 

Journeys can be gentle strolls, even if sometimes long. Other times journeys are much more difficult hikes, up hills with only the short relief of a plateau from time to time. It can feel as though you never quite reach the top to appreciate the view. Sometimes there are unexpected hailstorms or a break in the clouds allowing the warmth of sunshine. Sometimes it would have been better to turn left. Either way, it helps to plan a little, knowing where you’re supposed to be going and what you should pack.

ETV Judge for Yourself

Euthanasia – Judge for Yourself

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PALPRAC Chair Dr. Julia Ambler discussing Palliative Care in the context of an ongoing discussion on euthanasia.

WATCH HERE: https://www.enca.com/shows/judge-yourself-dennis-davis-26-may-2022

MEDIA RELEASE – Euthanasia is not a Palliative Care practice.

As the Association of Palliative Care Practitioners of South Africa (PALPRAC), we would appreciate this opportunity to respond and describe Palliative Care more comprehensively due to the recent debate around euthanasia in the media. Euthanasia is not a Palliative Care practice.

The aim of Palliative Care is to actively and compassionately address the suffering of patients with life-threatening illnesses. This is achieved by alleviating “total” pain. Patients and their family members are supported with physical, psychosocial, and spiritual care in response to their assessed current and anticipated needs. This holistic approach allows for rapid and effective relief of suffering, allowing a patient and their family to live with optimal quality of life until the time of death.

The intention is to focus on measures that bring comfort and an extra layer of support to patients and their families whilst they are actively living, and to assist in preparations for and beyond the death of the patient. Death is considered a natural, inevitable process and Palliative Care aims to neither hasten nor postpone it. Fears, which understandably result from the anticipation of a person’s death, may be allayed with the assurance of impeccable assessment of pain and other distressing symptoms, prompt and pre-emptive interdisciplinary Palliative Care, transparent communication and empowering patients and their families to voice their health care wishes.

We respect the autonomy of the patient, particularly in relation to their healthcare preferences, however, Palliative Care does not condone or support the practice of euthanasia. The literature supports that, with better understanding and provision of quality Palliative Care, there are fewer requests for euthanasia. Palliative Care practitioners endeavour to act ethically when making difficult recommendations regarding withdrawing and withholding of treatments and in so doing undertake not to prolong unnecessary suffering. We recognize that suffering is unique to each person, therefore our care is tailored within a trusting therapeutic relationship. In our experience, patients remain hopeful in meaning-making during their journey, despite deteriorating health and impending death. This personalised support eases the family’s experience of grief.

Euthanasia does not form part of Palliative Care practice. The vulnerable need to be protected, even more so near the end-of-life. Few understand Palliative Care as a choice in care and currently only a minority have access to this valuable service.

Our call as Palliative Care practitioners would be to clarify the difference between Palliative Care and euthanasia, and to increase the awareness, access and availability of Palliative Care within all sectors of our South African health care system.

Media enquiries can be directed to Andrew Francis andrew.francis@palprac.org 0827738467

SPOTLIGHT on Pain Management

Spotlight on Pain Management

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Putting the spotlight on pain management.

Link to article:  https://bit.ly/3sPHm22

Addressing the need for good pain management, SPOTLIGHT address this concern for many South Africans.  The article address inequalities in access to pain relief, assessing pain relief and treatment.  Thank you to Dr. Margie Venter and SPOTLIGHT for this publication.

https://www.spotlightnsp.co.za/

 

Palliative Care South Africa

Palliative care access remains a problem, also in the South African private healthcare sector.

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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 info@palprac.org with your story. Patients and family’s voices are urgently needed to help shift the status quo.

Dignity and Palliative Care during Covid.

Dignity and Palliative Care in the time of Covid

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Photo by redcharlie on Unsplash

By Dr Raksha Balbadhur, April 2020

“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?

“We also have a responsibility to protect our vulnerable palliative care patients …”

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.

Physical Considerations:

  • 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.
Photo by Imani on Unsplash
Photo by George Kantartzis on Unsplash

Psychosocial Considerations: 

  • 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

Spiritual Care Considerations:

  • 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. 
“Death is an important phase of life.”

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!