There is nothing humans can do about the fact that everyone dies eventually, but there may be room to do better when it comes to how some doctors, nurses, and care workers break the news of dying and death and also how they give practical support to a grieving family, writes Ufrieda Ho for Spotlight.
She writes:
The case of Johannes Januarie
This has been the case for two Pretoria women and their family. Jacqueline Januarie and Althea Jacobs were left enraged, traumatised, and still without closure following the death of Johannes Januarie (59) on 6 January at the Mamelodi Day Hospital. Jacqueline was his sister and Jacobs his ex-wife.
Virginia Keppler from the community activism group Rea Thusa/We Help has been speaking for the family. Keppler says the women were “given the run-around, left walking from ward to ward and looking through patients books” when they tried to find a doctor to find out about Johannes’ last moments of life and where his body was being kept.
When they wanted to retrieve his personal belongings, they were shown to a room that Keppler was told was a storage room, with “cleaning equipment and filled with bloody laundry and other big black bags with other people’s belongings”.
“They were left traumatised and angry looking through those things. They didn’t even give them gloves,” says Keppler. The women started taking photographs on their phones and that’s when hospital staff allegedly manhandled them, tried to confiscate their phones, then locked them in the room, Keppler says.
“They were locked in there for 15 minutes. These are two people who had just lost their loved one – everybody has lost a loved one, they should know how that feels. If you’re poor, then you are treated worse than a dog. Even now the family has not been able to get Johannes’ belongings, which his mother wants back because this is their tradition,” says Keppler.
The Januarie family’s story is one that raises alarms because it signals how services at some hospitals can drift away from the ideal of compassion and empathy as the heart of healthcare services. It also highlights a broader issue of how medical efforts to prevent death – even over-medicalisation at the end of life – may obscure a need to understand death in the context of a cycle of life and death.
‘Not just about science and getting the medicine right’
Professor Kevin Behrens, director of the Steve Biko Centre for Bioethics at Wits University, says, “It is a problem that has not got enough attention. These things are being taught but we’re not getting across strongly enough that when you choose a profession in medicine, you are taking on not just knowing the science and getting the medicine right – you are also taking on the fact that at some point you will be working with extremely vulnerable people who are in a position where they are incredibly compromised.”
Behrens says there should be a stronger focus on teaching techniques and skills that balance empathy and engaged communication “without taking on everyone’s pain and facing burnout”.
It also comes down to facilities and their superintendents setting standards, maintaining these standards, and ensuring there are consequences when personnel transgress these by being dismissive, professionally inattentive, and simply unkind. Behrens says patients also need better avenues to vent, a place where complaints are taken seriously, and also for patient awareness to be improved so people realise that they don’t need to put up with bad attitudes by doctors, nurses, or support staff.
“Doctors and nurses need to understand that it seems routine to them, but for that person receiving the news it’s devastating,” Behrens adds.
Behrens also makes the case for the medical profession to reframe dying and death, not as the point of having run out of medical options or coming to the losing end of a medical battle. Death is not a failure, he says.
At nearly two and half years of COVID-19 marked by dying and death dominating TV screens, news feeds and Zoom log-ons for funerals, death is still a topic too taboo, too depressing to be discussed easily. It led to the release at the end of January of a Lancet Commission report titled The Value of Death: bringing death back into life (Lancet Commissions are special reports of The Lancet medical journal). The commissioners are three co-chairs and 22 commissioners, with collaborators in more than 110 countries.
The report calls for a “rebalancing of death and dying” to reach a “realistic utopia of a new vision of how death and dying could be”. Changing death systems, they argue, should hinge on five principles. These are: “the social determinants of how death, dying, and grieving are tackled; dying is understood to be a relational and spiritual process rather than simply a physiological event; networks of care lead support for people dying, caring, and grieving; conversations and stories about everyday death, dying and grief become common; and death is recognised as having value.”
It concludes by stating, “Death and dying must be recognised as not only normal but valuable.”
Palliative care: Supporting patients and families through dying
Leigh Meinert, advocacy manager for HPCA (Hospice Palliative Care Association of South Africa), says COVID-19 should refocus attention on building stronger interdisciplinary frameworks to support patients and families through dying, death, and bereavement. It also should remind us of the importance of the basics of respect and dignity.
“When you build interdisciplinary teams then there’s a referral system, it’s not expecting doctors and nurses or hospitals to be doing bereavement counselling but it’s about working with social workers, psychologists, religious leaders, and other community-based support structures,” Meinert says.
They are also not “nice to haves”, she adds because palliative care is national policy and also a requirement from the World Health Organization (WHO).
“We have a national policy for palliative care, which was approved in 2017 and it requires every province to put policies in place. Unfortunately, the only province that has done so is the Western Cape. So it’s a question of implementation.
“The WHO recommends that all healthcare workers should receive basic training in palliative care but this has not been implemented in undergraduate curricula countrywide so doctors and nurses find themselves ill-equipped and poorly supported to deal with the complex communication tasks and ethical dilemmas that the pandemic required them to engage with,” Meinert adds.
For the Health Professions Council of South Africa there is no specific policy in place to guide its members, says Christopher Tsatsawane, head of division for corporate affairs. “The practitioner must handle death in terms of the Birth and Death Act.” He also referred to a Western Cape Department of Health guideline from 2020 that sets out procedures for issuing death notices.
Juanita Arendse, chief director of emergency and clinical services support in the Western Cape Department of Health has worked on the province’s model and strategy for palliative care. In 2019, the province put in place a formal course to train health professionals in a 40-hour course to incorporate palliative care in their work. That year they reached 133 health professionals. By 2020, Arendse notes in her presentations on the topic, COVID-19 made glaringly visible the gaps in palliative care services.
“Palliative care was not yet our business as usual in the public sector – our focus has been on prevention, promotion, curative, and rehabilitation – we were still at the starting blocks in many areas,” she stated in a recent presentation. Arendse also highlighted the need for spiritual care; better recognition for the role of social workers; and the need to debunk myths of palliative care.
Januarie case now being investigated
Returning to the death of Johannes Januarie and the treatment of the Januarie family after his death, the Mamelodi Day Hospital’s media and communications officer Aobakwe Selebogo confirms they opened an investigation into Januarie’s case. Selebogo says the hospital has tried to contact the family to return Januarie’s belongings.
“We have reports that the family became hostile, aggressive, and disrupted service delivery, hence security had to be called to intervene. The hospital has reached out to the family to afford them an opportunity to present their concerns and unhappiness… they declined.”
Responding to questions about training to enhance professionalism, empathy, and competence in guiding family members through procedural and administrative processes after a death, Selebogo says they have ongoing professional development courses in the institution headed by the staff development and the quality assurance team.
What should happen when a loved one dies in hospital?
Mamelodi Day Hospital outlined what their procedures are for notifying the next of kin of a death.
They say it is a task that should be undertaken by the clinician on duty but a nurse in charge can also give the news. The death is recorded on a TPH 135 form.
At the hospital, authorised personnel should lead the family to the mortuary where staff will have in their possession paperwork (BI 1663 forms) completed by the doctor who certified the death. The mortuary attendant assists in completing forms and ensures that outstanding payment to the hospital is processed. A nominated undertaker must also fill in the relevant section in the BI form. The mortuary attendant then seals the forms as confidential, hands them over to the family, which can then only be opened by officials from Home Affairs.
Lancet Commission Value of Death
Lancet Commission – The value of death (Open access)
See more from MedicalBrief archives:
Helping doctors face the uncomfortable task of discussing death
Palliative care associated with shorter hospital stays and lower costs
Release of 4th edition of SA's ‘Standards for Palliative Healthcare Services’
Sisters lose UK court fight over ‘goodbye hug’ for father in coma
End-of-life: The disconnect between patients’ wishes and physicians’ beliefs