Run by CareConnect, a health information exchange NPO, the two-year pilot project gelled families and a multi-disciplinary team of healthcare professionals together to ensure everyone was supported and up to date on the treatment, prognosis, and progress of their loved ones in ICU during all three Covid-19 surges. Ongoing counselling and support were provided to grief-stricken families.
The project co-leader, Yolande Riekert, an occupational therapist, told some 500 delegates to the Palliative Care Conference at the Vineyard Hotel in Cape Town at the end of last month, the first since 2017) that her team wanted to expand the model to other local hospitals because it was ‘essential work,’ of equal value in a less pressured post-pandemic setting.
An illustration of the impact of dismal doctor communication on the loved ones of critically ill patients came from Sister Clarence Mini, a conference delegate, whose husband, former CMS chairperson, Dr Clarence Mini succumbed to Covid 19 in the Unitas Hospital ICU in Pretoria on 11th May 2020.
Dr Mini, who was chairperson of the Council for Medical Schemes, spent five weeks on ventilation in Life Bedford Gardens and Unitas hospitals, his wife and children unable to see him for the first eight days – during which Mrs Mini said communication was at first absent, then ‘very poor.’
“I called the admitting physician several times, but he never called me back. When he did, he said he looked after patients in three hospitals and was very busy. When Clarence was moved to ICU I asked why and they said they didn’t think it was Covid, but it was later shown to be Covid. I called a contact at Life hospitals to complain about the poor updates.”
Personal friends with the then Health Minister, Dr Zweli Mkhize, Mrs Mini wrote to him to complain while calling in favours from highly placed health department officials. Dr Mini was subsequently transferred to the Unitas Hospital and put under the care of a top physician.
“It turns out they perforated one of his lower lung lobes during a procedure at the first hospital,” she said.
In her letter to Dr Mkhize, Mrs Mini asked whether specialists/doctors were allowed to perform procedures ‘on our loved ones without any consent.’ She said Dr Mini had a gastroscopy at least twice, with claims that he had a gastric bleed which had to be stopped.
“As a professional nurse, I could see that my husband’s condition was not good. I had to try and prepare our children for the worst outcome. I found these few incidents very disturbing. One understands that it is difficult during this lockdown period to meet with families etc, however, it leaves me wondering what else my loved one was subjected to because he could not communicate, and we were often not informed of everything that was going on. Communicating with families is key this pandemic and I think there is a huge gap. Specialists cannot do everything themselves.”
She said a deep irony was that her husband was passionate about palliative care, having recently completed the course himself.
Dr David Thomson, a Groote Schuur Hospital surgeon and critical care specialist, says anyone shining a spotlight on the quality of life at the end of life was doing patients, families and the healthcare system a ‘great service.’
“It’s a difficult area and they’re helping manage that transition in a very emotive and challenging environment,” he adds.
Doubling as a transplant surgeon, Dr Thomson said organ donation rates were also hugely boosted by effective, compassionate end of life care.
“There’s no culture saying you as a healthcare professional handled it poorly – but proper palliative care is an outcome measure that should be built in for the ICU patient,” he asserts.
Dr Rene; Krause; a family physician and the Palliative Medicine Course Convenor at the University of Cape Town and Groote Schuur Hospital, said the importance of palliative care across the continuum of care could no longer be disputed.
“The Western Cape Department of Health has made huge strides in integrating palliative care at sites like Groote Schuur – and the impact on families is significant.”
She leads a palliative care team of two professional nurses, a doctor, an auxiliary health worker, social worker, assistant nurse and an administrator across departments at Groote Schuur, teaching, training and administering symptom and pain control, before linking discharged patients with community resources. Some 100 patients are referred to her team per month which holds 50 family meetings monthly. Krause said similar work was being done at Chris Hani Baragwanath Hospital.
“This work is replicable and transferrable and relatively inexpensive, but it can’t happen without a policy and hospital managers who buy into palliative care – and see it as a basic human right. We all want to improve the quality of life for our patients and their families, provide value for care – and ultimately, prevent moral distress among our healthcare professionals,” she said.
Riekert said her counsellors accompanied doctors on ward rounds, got medical updates and helped families process the information. During Covid, they facilitated limited visits by families to their loved ones, plus video and voice notes between ICU patients and families to ‘help keep everyone’s spirits up.’ They also gave feedback to the medical team on the needs and queries of the families – and made relevant referrals when family grief counselling was needed.
“Often the family didn’t understand exactly what their loved one on a ventilator was dying of and were in considerable emotional and spiritual distress. We tried to foster resilience and a sense of connectedness,” she said.
The goals of the psycho-social palliative care initiatives were to improve communication skills and thereby the capacity, confidence, and competence to discuss and document patient preferences, alleviate suffering caused by emotional distress and loss, and grief and bereavement resulting from isolation, sudden demise, limited traditional mourning practices, plus any lingering mental health issues.
Riekert said there was a 20% mortality in the ICU under normal circumstances with 69% of family members experiencing anxiety and 35% experiencing depression during the patient’s ICU stay. A full 35% of families still exhibited PTSD symptoms six months later.
“We tried to foster resilience by finding hope and meaning in uncertainty, by demonstrating genuine concern and acceptance and actively listening and acknowledging and validating their emotions, while paying attention to their dignity,” she added.
Poor communication aggravates symptoms.
She said poor communication with families was associated with higher levels of symptom burden which could persist long after a patient’s ICU stay. The greatest challenge to humane and appropriate care for critically ill patients was the psycho-social adjustment, not the ability to prolong life,” something rarely understood.
There was usually no single healthcare professional able to assume full responsibility for managing the flow of information to the family and assessing their needs. Their team’s communication facilitators/counsellors helped clarify complex medical information, promoting family-centred decision making.
Ethical discussions with the healthcare team and family reduced the number of days patients spent in the ICU before death because it allowed the withdrawal of radical interventions that had little to no therapeutic benefit. This significantly reduced ICU costs while earlier decisions about withdrawing life support could be done in a way that reduced, or at least did not increase, the psychological burden for the family.
Riekert said the CareConnect team had transformed the way medicine was practiced in the hospital and testimonials from grateful families were ‘overwhelmingly positive.”
Both counsellors and physicians saw clear benefits in the service which reduced family trauma, improved patient/family satisfaction and, “very importantly,’ reduced the burden on hospital staff.
“Improved communication in the ICU is essential and this service is also universally applicable to emergency care settings outside the context of Covid 19. We’re currently working on ways to implement it in an acute care setting,” she added.
Another conference delegate, Sister Margie Bollman, a stalwart of the Stepping Stones Hospice in Johannesburg said it was ‘very sad,’ that such practices were confined to just a few hospitals in the Western Cape and Gauteng.
“It’s so replicable. To have just one person as the voice between the doctor and the patient is crucial. Patients have this terrible angst about talking to the doctor and they often hold them as demi-gods. Usually, the doctors are far too busy to have any time to talk to the family – which is their responsibility, especially if they’re going to change treatments or make life-altering decisions. Any patient, not just cancer patients, can be in need of palliative care and a multi-disciplinary team is essential for this,” she added.