Department of Education, International Program UNESCO Chair in Bioethics,
University of Haifa, Melbourne Australia
PATIENTS ACROSS THE GLOBE:
ETHICAL DILEMMAS FACED BY C-19 AND NON-C-19 PATIENTS’ ACCESS TO HEALTH CARE
DEPARTMENT of EDUCATION, UNESCO CHAIR in BIOETHICS, UNIVERSITY of HAIFA
WEBINAR SUMMARY REPORT
Prepared by Emeritus Professor Des Cahill, RMIT University, Melbourne and Australian Bioethics Unit of the UNESCO Chair in Bioethics, University of Haifa.
The third UNESCO Chair webinar of 2021, held on 21st. February, 2021, addressed the issue of patients in international perspective across the globe. It was the 36th such webinar with the focus on COVID-19 and all its ramifications. It was conducted under the sponsorship of the Department of Education’s UNESCO Chair in Bioethics located at the University of Haifa which works to encourage the teaching of bioethics in medical and health sciences and law courses with its 250 centres across the world. The meeting was co-chaired by the Melbourne-based Professor Russell D’Souza, Chair, Department of Education (International Program) of the UNESCO Chair in Bioethics and Professor Mary Mathew, the director of the Indian component of the Chair.
The webinar began at 11.33 p.m. (Australian Eastern Summer Time) and finished at 1.46 a.m. with about 70-75 participants on the ZOOM app. There were three presenters from Croatia, the U.K. and the U.S. and seven panellists from Brazil, Canada, Hong Kong, India, Sth. Africa, the U.K. and the U.S… Infection rates for these countries are currently (with the no. of deaths per 100,000 population from the John Hopkins University data centre in Baltimore on 26th February): Australia (3.64), Brazil (119.30), Canada (58.85), Hong Kong (China 0.35), India (11.59), South Africa (85.71), the UK (183.46) and the U.S. (154.63).
Professor D’Souza welcomed all participants; he highlighted the global nature of the seminar as a hallmark of solidarity. Ms. Jasna Karacic from the University of Split in Croatia who is a member of the International Council of Patients’ Ombudsman located in Belgium began her presentation on limiting access to healthcare, especially for those at risk from C-19. World health coverage depends on governments, and hospital lockdowns had laid bare the long-ignored risks of a pandemic. She drew attention to the dilemmas of providing or postponing the scheduled process of operations, treatments etc., depending on the actual situation in hospitals. Can sufficient care be given in hospitals? The limitation is access to hospitals. It highlights the risk to chronic patients and oncology patients. To reduce waiting lists, we need to pay attention to alternate means such as telehealth and email consultations which can be powerful tools. The aim always is to provide necessary, in-person clinical services, especially to cancer and other patients with chronic illnesses. But in the pandemic they have been given less attention whereas cancer and C-19 patients should receive equal treatment. The question being asked is: is the new normal that only C-19 patients be treated. Nested in this is another issue regarding people dying only from C-19 or from complications made worse by C-19.
The second presenter was Professor Vivienne Harpwood from Cardiff University who is Chair of the Welsh National Health Service Confederation. She stated quite clearly that ‘my perspective is non-COVID patients who are the hidden victims of COVID-19’. They are trying in vain to access health care in the U.K.. These patients are waiting longer than the targeted time, cases such as thoracic surgery and also mental health conditions. It is ‘The Non-Treatment Scandal’. This second catastrophe must be prevented where access to treatment is prevented and there is a lack of choice. There have been four ‘harms: (1) Harm from C-19, (2) Harm from an overwhelmed NHS, (3) Harm from a reduction in non-C-19 activity and (4) Harm from other social restrictions.
NHS has systems for tracking these hidden patients – in 2020, 5,500 patients had bowel cancer and there are now 4.6 million waiting for their NHS treatment to begin. Is the prioritising being dictated by the actual practicalities? Should some health care patients be re-assigned? Why are infection control procedures taking away precious resources? How much of all this is being guided by ethical and legal considerations? Many patients are now feeling hidden and forgotten and they are going to the media and seeking advice from patient groups. It would seem that NHS has to be reset with new forms of treatment like telehealth. The law may be on the side of the hidden victims.
The third presentation was given by Dr. Nancy Berlinger from the Hastings Center, a bioethics research institute in New York City who said that the voice of the patients was important. The humanity of the patients and their human rights is paramount in listening to their perspectives on treatment decisions. Where and how do treatment decisions get made? What do people in the system think? Some can be privileged over others. The pandemic has been a great leveller. It has revealed the vulnerabilities of any health system and of societies as has been clearly illustrated in the U.S.. She reminded her audience that 30-40 million people had died from HIV-AIDS. Interviews with doctors were showing that families were not giving the same level of support to patients, and medical professionals need to deal with this. How do we listen to the patient voice? She raised the issue of dementia patients where this illness has a long trajectory but is ultimately terminal. In dealing with dementia, we need the experience of gerontologists. The pandemic had been characterised by the high outbreaks in aged care homes. Delays result in harm, and so any delay in vaccine inoculation is harmful.
Professor Mary Matthew thanked the three presenters because their input raised many issues regarding patients on dialysis, and obstetrics patients. What about future pandemics?
The first panellist was a 26 year old Hong Kong student, Josie Pul Shan Chew, suffering from spinal muscular atrophy and a leading member of the Home Respiratory Support Society said there was suspicion of home-based therapies, and overcoming this was a slow process. From South Africa, Dr Victoria Pinkey Atkinson, Director of the NCO Alliance said that HIV-AIDS had placed big burdens on the health system but its method of transmission was quite unlike that of COVID-19 whose arrival had changed everything. ‘The system is fracturing’. The early lockdown meant that some were without food. But regarding policy and equity, a health system is built on priorities and evidence, and some patients have now been excluded. ‘We need to make the government more accountable’.
Mr. Mark Weir, Director of Strategic Planning and Patient Engagement from Woodstock Hospital in South-Western Ontario in Canada, spoke of more centre-based care which had been challenged by C-19, mainly because of the lack of PPE care. “Our concern is the role of loved ones in care and visitation policies. Patients are on a difficult journey. Are they dying with dignity?” Technology was helping to advance the processes involved. Ms. Faith Walker, patient advocate for the Equality and Human Rights Commission in Wales, said that many unethical things had occurred. She herself had been a C-19 patient and ‘I couldn’t see my mother’. There was a lack of access to so many things, including transport vehicles. Food packages had had to be delivered to families.
Dr. (Captain) Ritu Bryani, a dental practitioner and patient advocate from Pune, said that the 5-6 month lockdown had caused many logistical problems, including in transport. Smart phones cannot be everywhere and patients have been giving up. But cancer hospitals were not changed into C-19 hospitals. A second input from India came Mrs. Sulacha Vilas Patil, Deputy Registrar of the Sant Gadge Baba Amravati University in Amravati in Maharashtra, a C-19 patient and patient representative, said people are generally scared and certainly scared of going to a hospital. Patients have died alone and there is no one present at their funerals. The lockdown resulted in a huge movement from city to other cities and villages. The power of the local community had been demonstrated.
Dr Alessandra Barzanti, a patient advocate in the State of Minas Gerais in South-Eastern Brazil, said that many hospitals had been suspended because there were so many patients in C-19 hospitals even though many others required treatment.
In conclusion, Professor Mary Mathew thanked everyone for a very worthwhile webinar, especially the three presenters, because ‘sharing experiences makes us human’. Professor D’Souza said that it had been a real learning experience learning about the plight of non-C-19 patients. The next webinar would be held in a fortnight’s time.