OLDER PERSONS & THE PANDEMIC 3 Questions, Questions ...!

INTRODUCTION

Our journey has taken us form some basic concepts of human rights law applicable to older persons, through a human landscape that is not only kind and loving but also stained by abuse and violence for an estimated 1 out of 6 elderly persons in the world. Then there was the Covid-19 pandemic which affects older persons particularly hard. They began to die by the thousands, often lonely, without any near and dear by their side. And they still do. From the examples in my previous blog post it appears clear that these deaths cannot only be attributed to the frailty and comorbidity often linked to old age. There appears to be a much darker side to this tragic situation: Older people have often been prioritised away.

INDEPENDENT INVESTIGATIONS

In order to establish the truth with respect to older persons’ access to adequate medical care during the first wave of the pandemic and beyond, as well as their high death rates, it is imperative that investigations be carried out in all affected countries. Of course, investigations or comprehensive evaluations should not only deal with questions relating to the medical care of the elderly during the pandemic. They should be of a much more comprehensive nature in order to allow our governments to correct errors and better anticipate new pandemics, which will, this we know, at some point strike again. Dr. Pedro Alonso, epidemiologist and director of WHO’s Global Malaria Programme, has in this respect stated what should be self-evident: “If you don’t find out what has gone wrong, you are doomed to repeat the errors”.[1] The push for an independent and impartial Covid-19 investigation has been particularly strong in Spain. Twenty scientists, led by Dr. Alberto García Basteiro, an epidemiologist, have made a forceful appeal to the Spanish government published in The Lancet, in which they detail issues of concern, the requirements of the investigation and suggest some guiding principles.[2]

Investigations may divulge some unpleasant truths, but as can be seen with regard to Sweden, they are essential. In a press briefing on 24 November 2020, the Swedish Health and Social Care Inspectorate (IVO) announced the result of its “Inspection of medical care and treatment of people living in special residences for elderly”.[3] The inspection was primarily limited to the period March-June when the number of Covid-19 deaths in elder care was particularly high in Sweden. Although IVO is a government appointed authority, and therefore cannot be considered totally independent in the strict sense of this term, its conclusions are damning for at least part of the elder care in Sweden. Its findings add strong fact-based evidence proving the utterly vulnerable situation of older persons in care homes during the first part of the pandemic. The obvious abdication of medical and ethical responsibility, which is illustrated by the IVO findings, is heart-breaking from a human perspective. Moreover, the failure to give proper attention and care to the elderly in this group not only violate Swedish law but also raises serious issues under international law with regard to older persons’ basic human right to respect for their dignity, their right to life and their right to adequate medical health care.

Here are the most striking conclusions of the IVO investigation: According to the reviewed patient journals, which primarily concerned persons 85-95 years of age, about a fifth of the patients, or 16-22 %, never got an individual assessment by a medical doctor: In this group, about 40 % were not even assessed by a nurse. Further, in 63-77 % of the cases, there had been a “distance assessment” by a medical doctor, primarily by telephone; in 8-12 % of these cases the patient/relatives had not been made to participate in the assessment. A physical assessment in which the patient/relative had been involved, had only been carried out in 5-7 % of the cases covered by the review of the patient journals...[4]

IVO’s “decision-points” (beslutspunkter) are aimed at all regions in Sweden, and cover the following four issues: (1) elderly living in care homes have not received care and treatment based on the need of the individual person in connection with suspected or confirmed Covid-19; (2) elderly living in care homes and their relatives have not been informed about and made to participate in the care and treatment in connection with suspected or confirmed Covid-19; (3) decisions about care, and the carrying out of care, at the end of life have not been carried out in accordance with current regulations during the Covid-19 pandemic for older persons in care homes; and, finally, (4) because of deficiencies in the patient journals at the level of primary care, it is impossible to follow the care and treatment of older persons in care homes who have had suspected or confirmed Covid-19.[5]

IVO’s findings and decisions provide a highly important contribution to the present debate in Sweden regarding the treatment of older persons in care homes during the pandemic. A supervisory authority has finally been able to confirm that many of them were not given the medical care to which they had a right. The situation is serious, and in this blog, I will try to continue following IVO’s ongoing supervisory work whenever relevant.

SELECTION OF QUESTIONS NEEDING ANSWERS

During at least the initial months of the Covid-19 pandemic, the health care systems in our various countries displayed considerable malfunctions with regard to the elderly. Sweden illustrates all too well the gravity of the situation, and it shows that investigations are indeed essential to find out what has happened. However, I trust that our governments will all support even more comprehensive evaluations by independent medical and other relevant experts so that real improvements can be made both to the preparedness and handling of pandemics. The present tragedy with regard to both older and some younger people must not be repeated!

It will be necessary to ask hard questions to our authorities about their handling of the present health crisis. In this context, the focus is of course primarily on the treatment of older persons. However, questions of a more general nature will also be included, since they are often intrinsically linked. Given the complexity of the situation and the fact that I am a lawyer, not a medical expert, the questions below will by necessity be incomplete.

Preparing for epidemics and pandemics: To what extent were our governments prepared to meet the challenges posed by the sudden surge of people falling seriously ill, including the elderly? Medical experts had warned us for years that a pandemic could or would happen, and that it could happen quickly at that.[6] In other words, it was not a question of “if” but “when” this calamity would befall us. Given this situation, what specific steps, if any, had our governments taken to prepare for a new serious epidemic or, worse, pandemic? On a general level, had they developed a national public health strategy and/or plan of action on the basis of epidemiological evidence, for instance?[7] Had they provided regulations for both the public and private health sectors to help them prepare for such an event? It is important to involve also private hospitals and nursing homes at the preparatory stage already so that all actors are fully aware of their responsibilities when a health emergency occurs.

Had Governments taken socio-economic dimensions into consideration in defining their strategies? If so, what was their impact on the measures that might have to be taken in a pandemic to ensure that inequalities due to social, financial, racial, ethnical or other status would not impede access to adequate medical care for the people concerned? Furthermore, did the strategies address other possible challenges that might exist in terms of ensuring equal access to adequate health care in times of crisis, such as having no health insurance, or a public or private one?

Had governments planned for effective dialogue with regional and local authorities in times of crisis? Had they prepared for effective dialogue with medical associations and independent medical scientists? If so, how?

What advice, information, regulations and training had governments and their national health authorities transmitted to hospitals and nursing homes – whether public or private - in order to ensure the best possible management of their facilities in times of crisis? What kind of controls had they devised in order to ensure that any relevant laws and regulations relating to health care were followed by medical staff to protect the safety of patients both in public and private hospitals and care facilities?

Had the medical associations in their turn prepared for the eventuality of a pandemic? If so, how had they prepared for it? Had they developed guidelines to be applied in emergency situations, as was done in Switzerland? If so, what rules had inspired those guidelines? Medico-ethical rules? Constitutional or other legal provisions?

Had governments tried to ensure that there would be sufficient hospital beds and intensive care units, or that they could at least be swiftly added in case of a sudden necessity? Had they tried to ensure that there would be sufficient protective equipment for medical personnel, patients and their populations, such as face masks, gloves, disinfectants, etc.?

Did the respect for international human rights law ever enter into the planning of an effective response to a future pandemic by governments, medical associations, etc?

The pandemic arrived: Management, resources, and conditions of employment: At the central level, did the governments manage the pandemic in the best possible way? For instance, how was their dialogue with regional and local authorities? With medical associations? With independent medical scientists? What went well? What did not go so well? What could have been done better?

How were hospitals and nursing homes managed? How did the management involve the staff to ensure that care was optimized? What went well and what went less well? What improvements could be made for the future?

More specifically, did hospitals and care homes have sufficient financial and material resources to effectively deal with the extra burden of very ill patients? Or, did a shortage of funds impede effective measures from being taken to prevent or limit contagion, both in the early and later phases of the pandemic? Austerity measures in some countries (Spain), and a lack of adequate investment in others (Sweden) appear to have seriously fragilized their health care systems.

To what extent, if at all, was investment made to buy safety equipment for staff and patients both prior to and after the outbreak (there have been complaints of a lack of protective material in all three countries considered in my previous post, that is, Spain, Sweden and Switzerland)?

What were the employment conditions of the staff in hospitals and care facilities? Did they have an adequate salary? Did they get compensation for additional work? Did they get sufficient rest? With regard to nurses, assistant nurses, and other care workers, in particularly in care homes, were they hired on a permanent or temporary basis, or maybe even by the hour without any guaranteed income in case they fell ill and could not go to work? Were they encouraged or possibly even ordered to go to work although they did not feel well, including being ill with Covid-19? For staff with insecure employment conditions, would the state concerned step in to guarantee a minimum salary so the person could stay at home in case of illness?

Specific questions regarding care facilities: After the pandemic struck, how could the virus enter so many care facilities with such brutal swiftness in Italy, Spain, Sweden, Switzerland, the United Kingdom, the United States and more? How could it spread so quickly once inside the facilities? Had the staff received adequate training in hygiene both prior to the pandemic and after it broke out? If so, was the training given in a language that all staff members could understand? Did the staff have adequate access to protective equipment when the situation required them to use it for both their own protection and the protection of their patients?

How was the day-to-day care and medical attention carried out? Did the elderly get swift and adequate medical help when falling ill with suspected Covid-19 symptoms? Were they seen by medical doctors (we now know that they often were not in Sweden)? What discretion do medical doctors have in denying a physical examination of a patient with suspected or confirmed Covid-19? On what grounds – medical or other - were people with Covid-19 not transferred to hospitals but simply given antibiotics or palliative care, for instance?

Were there cases when older people with private insurance were accepted for medical care in hospitals when such care does not appear to have been available to persons with public insurance (Spain at some point during the first wave)?

Specific questions regarding elderly living at home: What were the medical reasons for refusing hospital care, including intensive care, to elderly persons (and sometimes younger persons too) seriously ill with Covid-19? Where there any objective medical reasons for such a refusal? Were there possible instructions from the central or local government or the public health authorities? In the affirmative, what did these instructions say and to what extent were they followed in practice?

What discretion did medical doctors and nurses have for approving or rejecting hospitalisation and intensive care for elderly with Covid-19?

Were persons with an immigrant background given the same treatment as others? Are there any indication that they were not given the same favourable treatment, including intensive care?

Why has it been necessary for family members in some cases to insist that their parents be given intensive care (Sweden)? What happens to elderly with Covid-19 who have no family members who can speak up for them? How do we ensure that each person is given the best possible medical care also in extreme situations without necessarily having somebody who actively intervenes on their behalf?

Striking a balance between societal interests: In connection with the first wave of the present pandemic, a few European countries imposed a lockdown – with some variations depending on the country (e. g. Italy, Spain, France, Switzerland), while others did not (e. g. Sweden). To what extent did economic considerations influence the decision-making of countries who decided for or against a lockdown? Is there any evidence that governments were willing to strike a deadly compromise to save at least part of their economy from a serious backlash due to the inevitable slowdown of the economy in case of stricter measures? As we are in the midst of the second Covid-19 wave, can any lessons already be drawn as to how we could better balance various societal interests in a future epidemic or pandemic?

THE FUTURE AND DEFINING OUR HUMANITY

Answers to most of these and many more questions will probably have to wait, but I trust that we will get some clarity soon for purposes of improving the management of the present pandemic. As I have already stressed, answers will also be critically important in order to prepare for the next health emergency. Whether we are medical experts, lawyers, politicians, or simply part of the public, we all need to be able to draw lessons from this ordeal in order to prepare for the future.

This being said, I also fully understand that perfection is impossible when we face such a sudden health crisis and that it must have been extremely difficult for our leaders to be propelled into a situation that most of them were not prepared for.[8] Some of them showed responsible leadership, others a little less, while a few were careless, and at least one right-out reckless (I am kind here!).

While we wait both for the pandemic to pass and for answers to the preceding questions and many more, we need to continue to live our lives in our joint society, being aware that our humanity must not be defined by economics or by the health or convenience of the privileged few or even by the majority in general of people. For each one of us, independently of our colour, origin, gender, wealth or age, for instance, it must be exclusively defined by our individual intrinsic humanity. Human Rights – Better Life, also for the elderly, who have spent their lives building the society from which we are all benefitting today, and who have far too few spokespersons to defend their dignity.

Let us all stand up for the human rights of our seniors! They must not be left behind! They must not be prioritized away!

Anna-Lena Christina

27 November 2020

[1] See interview with Dr. Alonso in El País of 20 June 2020 “En España se ignoraron principios clave en salud pública”, in https://elpais.com/sociedad/2020-06-19/en-espana-se-ignoraron-principios-clave-en-salud-publica.html; consulted on 23 November 2020. [2] Alberto García Basteiro, et al., “The need for an independent evaluation of the COVID-19 response in Spain”, The Lancet 2020, Vol. 396, 22 August 2020, pp. 529-530, at https://www.thelancet.com/journals/lancet/article/PIIS0140-6736(20)31713-X/fulltext; and Alberto García Basteiro, et al., “Evaluation of the COVID-19 response in Spain: principles and requirements”, The Lancet Public Health 2020, Vol. 5, November 2020, p. e575, at https://www.thelancet.com/journals/lanpub/article/PIIS2468-2667(20)30208-5/fulltext; both texts consulted on 23 November 2020. See also interview with Dr. García Basteiro in El País of 22 September 2020, “No hicimos los deberes durante el confinamiento”, at https://elpais.com/ciencia/2020-09-21/no-hicimos-los-deberes-durante-el-confinamiento.html; consulted on 27 November 2020. [3] For a summary of the result, see https://ivo.se/publicerat-material/nyheter/2020/ingen-region-har-tagit-fullt-ansvar-for-individuell-vard/, consulted on 24 November 2020. [4] See the document published for the IVO press briefing on 24 November 2020, entitled “Tillsyn av medicinsk vård och behandling för personer som bor på särskilda boenden för äldre”, at https://ivo.se/globalassets/dokument/tillsyn/nationell-tillsyn-av-aldreomsorg/presentation-presstraff-m.m/2020-11-24-presentation-presstraff-ivo.pdf, consulted on 24 November 2020. [5] Ibid. [6] See e.g. Olsen, Björn, Pandemi. Myterna, fakta, hoten, 2010, Björn Olsen and Norstedts; the E-Book version that I am using was published in 2020. “Los científicos habían dicho a los políticos hace mucho tiempo que esto iba a pasar”, interview with Carlos Moedas, former European Commissioner for Research, Science and Innovation, in El País of 16 June 2020, see https://elpais.com/ciencia/2020-06-15/los-cientificos-habian-dicho-a-los-politicos-hace-mucho-tiempo-que-esto-iba-a-pasar.html; and see also interview with Dr. Pedro Alonso, referred to in note 1; both articles consulted on 23 November 2020. [7] See for instance the obligation of the States Parties to the International Covenant on Economic, Social and Cultural Rights, General comment No. 14 (2000), The right to the highest attainable standard of health (art. 12), § 43(f); for the text see: http://docstore.ohchr.org/SelfServices/FilesHandler.ashx?enc=4slQ6QSmlBEDzFEovLCuW1AVC1NkPsgUedPlF1vfPMJ2c7ey6PAz2qaojTzDJmC0y%2B9t%2BsAtGDNzdEqA6SuP2r0w%2F6sVBGTpvTSCbiOr4XVFTqhQY65auTFbQRPWNDxL [8] One interesting exception is the former Vice President of Taiwan, Chen Chien-jen, who stepped down as vice president on 20 May 2020. Mr. Chen Chien-jen is an epidemiologist and expert in viruses and was a top health official during the SARS outbreak in 2003. According to New York Times, he then “pushed a series of reforms to prepare the island for the next outbreak, including building isolation wards and virus research laboratories.” Following that outbreak, the government also established “a disaster management center, increased production of protective gear and revised the infectious disease law, among other measures”; see New York Times of 9 May 2020, “Taiwan’s Weapon Against Coronavirus: An Epidemiologist as Vice President”, see https://www.nytimes.com/2020/05/09/world/asia/taiwan-vice-president-coronavirus.html?searchResultPosition=1; consulted on 27 November 2020.