Palliative care: Essential support for patients with heart failure in the COVID-19 pandemic

Palliative care: Essential support for patients

with heart failure in the COVID-19 pandemic

The self-archived postprint version of this journal article is available at Linköping University Institutional Repository (DiVA):

http://urn.kb.se/resolve?urn=urn:nbn:se:liu:diva-167410

N.B.: When citing this work, cite the original publication.

Hill, L., Beattie, J. M., Geller, T. P., Baruah, R., Boyne, J., Stolfo, G. Di, Jaarsma, T., (2020), Palliative care: Essential support for patients with heart failure in the COVID-19 pandemic, European Journal of

Cardiovascular Nursing, , 1474515120932814. https://doi.org/10.1177/1474515120932814

Original publication available at:

https://doi.org/10.1177/1474515120932814

Copyright: Elsevier

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Palliative care: essential support for patients with Heart Failure in the COVID-19 pandemic Authors

Loreena Hill1_{, James M. Beattie}2_{, Tal Prager Geller}3_{, Resham Baruah}4_{, Giuseppe Di Stolfo}5_{, Tiny} Jaarsma6,7

Affiliations

1. School of Nursing and Midwifery, Queen’s University, Belfast, Northern Ireland. 2. Cicely Saunders Institute, King's College London, London, United Kingdom. 3. Palliative care centre DOROT medical centre Netanya, Israel.

4. Chelsea and Westminster NHS Foundation Trust, London, United Kingdom.

5. Cardiovascular Department, Fondazione IRCCS Casa Sollievo della Sofferenza, San Giovanni Rotondo, Italy.

6. Department of Health, Medicine and Health Sciences, Linköping University, Linköping, Sweden.

7. Julius Center, University Medical Center Utrecht, the Netherlands

Address for Correspondence: Dr. Loreena Hill, School of Nursing and Midwifery, 97 Lisburn

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Introduction

Severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2) was first identified in Wuhan, the capital city of China’s Hubei province, in late 2019 following a sudden and unexpected outbreak of severe acute respiratory infections (1,2). Later named by the World Health Organisation (WHO) as COVID-19, patients with this new disease presented with a spectrum of symptom severity ranging from mild common cold-like symptoms, to a severe form of interstitial pneumonia similar to an acute respiratory distress syndrome (ARDS) with a high case fatality rate (3). In March 2020, the WHO declared COVID-19 as a global pandemic, commenting on its diagnosis and transmission, the required urgent availability of hospital resources, as well as raising possible implications about long-term health consequences. The unprecedented and escalating requirement for in-patient hospital services, particularly access to life-saving intensive care unit (ITU) beds, coupled with rising mortality figures across the world caused significant alarm, driven staff redeployment and established clinical practices, and challenged us, both as members of the human family as well as health professionals, to recalibrate our behaviour and attitudes towards death and dying.

The delivery of palliative care has been described as an ethical imperative in supporting those likely to die during this pandemic (4). Patients with cardiovascular disease such as heart failure (HF) are known to have a higher likelihood of adverse outcomes after COVID-19 infection. In light of recent events, this short paper will review health practice and policy changes arising from the pandemic and signpost a selection of available tools and resources that can assist healthcare professionals in the provision of optimal palliative and end of life care for patients with heart failure (HF) in the current and post COVID-19 eras.

Change to heart failure service delivery

International guidelines recommend patients with HF are managed by a multidisciplinary team (MDT), comprising of cardiologists, HF nurses, pharmacists, palliative care professionals amongst others, who coordinate a seamless service transcending primary, secondary and tertiary care settings (5,6). Conventionally patients have been reviewed with face-to-face consultations, whereby clinical observations were recorded, appropriate tests ordered, evidence-based guideline directed management and therapy optimised, and self-care strategies promoted by such health

3 professionals (7,8). Patients with HF are frequently elderly, multimorbid, increasingly frail, and relatively vulnerable. As shielding and social distancing of varying degrees was instigated across most European countries, provision of this model of HF service delivery was either suspended, or reconstituted in a virtual format through telephone consultations or the use of telemedicine (9-11). A Cochrane review, and the Telemedical Interventional Management in Heart Failure II (TIM-HF2) trial in Germany, demonstrated that such remote telemonitoring, incorporating home assessment of weight, blood pressure, the electrocardiogram, and general health status within a 24/7 support system is effective in significantly reducing predominantly HF-related unplanned hospitalisations and deaths (12,13). Ongoing studies In Netherlands (14) and MeetinCy (REF) continue to demonstrate the benefits of such telehealth contact and the provision of tailored education on self-care and quality of life. However, whilst in the short term the use of virtual monitoring is appropriate, in the longer term, given the likelihood of HF disease progression, face-to-face appointments will need to be re-established to enable formal appraisal of the need for medication adjustment, and consideration for advanced therapies (15). Many of the symptoms of worsening heart failure such as shortness of breath, cough and fatigue are common to both heart failure and Covid-19 and difficult to distinguish both for patients and healthcare workers remotely. These enforced changes in HF service configuration have occurred at a time when patients and informal caregivers have become ever more fearful, increasingly aware of their susceptibility to this novel coronavirus. The effect of renin-angiotensin-aldosterone inhibitors enhancing the infectiveness of the virus was discussed mainstream and through social medium forums, however these concerns have not been widely endorsed (16). Rather, societal statements propose that HF patients, at any stage on the disease trajectory, should continue such evidence-based pharmacotherapies, previously proven to reduce morbidity and mortality (5,6,17). At present, however, many of these are not being initiated or sufficiently up-titrated due to the lack of objective clinical assessment. Indeed, many cardiac services report a worrying observation in a generally reduced number of cardiovascular disease patients attending hospital Emergency Departments, including those with acute coronary syndromes (18) The effects of this trend may become evident later in an increase in all-cause mortality as further data emerges. Patient-carer dyads require information and support on “keeping well” and “who to contact” if HF symptoms deteriorate. Position statements have been released nationally and internationally (11,15,19), advising on the

4 importance of maintaining HF specialist services to enable patients at point of crisis, to promptly seek help due to the possibility their condition might deteriorate to such an extent that they transition to an irreversible, ultimately terminal phase of their illness (Refer HFA Palliative paper 2020). Cardiac advice fora and engagement with social media have been utilised to encourage the public to seek healthcare support if concerned. In addition, some novel approaches have been established with MDT collaboration, through video conferencing, and the establishment of drive through clinics to ensure patients are reviewed as comprehensively and safely as possible (20). Professionals may need to embrace many of changes to HF service delivery as they become established practices, necessitating a need for future research on effective widespread implementation (i.e. reimbursement).

Communication, supportive and palliative care

During this pandemic, good communication is essential. At present, given the requirement for personal protective equipment (PPE), hospitalised patients can no longer read the professionals’ body language in their smile or facial expression, and are denied the solace of an un-gloved empathetic touch. To facilitate a more person-centred approach, it is important that the treating nurse or physician identifies themselves to their patients by name, providing verbal encouragement and reassurance as appropriate. This is especially important in the face of clinical deterioration, and in the United States, the Center to Advance Palliative Care (CAPC) has developed a Covid-19 response toolkit with clinical resources for professionals regarding communication, symptom management and Medicare emergency waivers to facilitate early access to palliative care (21). The need to acknowledge the prognostic ambiguity intrinsic to HF, particularly in the Covid-19 context, and to undertake challenging conversations about end of life preferences, requires all relevant professionals to adopt a palliative approach, combining objectivity with empathy, and truthfulness (22). Emotional and socio-cultural barriers may have to be navigated to facilitate valid shared decision making about future interventions (23). Discussions regarding ceilings of care or the withdrawal of treatment should take into account the HF patient’s current physiological status and pre-existing quality of life, any formal advance directives or statements, and their personal wishes and values, including an exploration of their cultural norms and spiritual beliefs (24,25).

5 Unfortunately, as a consequence of the inordinate surge in demand for ITU beds to facilitate invasive ventilation,at times professionals have been compelled to make decisions on ITU access in the moment, based predominantly on the concept of distributive justice, and prioritizing allocation of this constrained resource to those considered most likely to survive (26,27). HF patients assumed to exhibit a higher mortality risk might be denied this support based on their underlying condition. However, differences between patients under consideration for the same ITU bed space can be marginal, and such difficult judgement calls may be a source of moral distress to clinicians, resulting in burnout and fatigue (28). Furthermore, many healthcare professionals now caring for COVID-19 patients have been redeployed from their usual clinical environments, including those normally assigned to HF care, and are working outside their usual area of expertise to support heavily burdened clinical services. It is important to ensure systems of professional support are in place, with adequate processes for debriefing and reflective practice, to foster resilience and prevent burnout.

Alleviation of distressing symptoms

Recent editorials provide clinical guidance addressing the supportive care needs of patients with Covid-19 and management of the palliative care needs of polysymptomatic HF patients have been recently updated (20,29). Common symptoms associated with COVID-19 are fever, cough, breathlessness and muscle aches. Breathlessness tends to become the dominant symptom, this viral lung infection resulting in reduced pulmonary diffusion capacity leading to profound hypoxia and driving the need for high flow oxygen therapy. However, in addition to respiratory failure, the experience of breathlessness is also mediated by the degree of ventricular dysfunction, and is further influenced by emotional, environmental, cultural and social factors. Optimal management requires a holistic approach. Pharmacological therapies such as the use of morphine remain appropriate (30). Caution is warranted in the use of some non-pharmaceutical interventions, such as fan therapy. “Silent hypoxemia” has also been noted for a select number of patients, who experienced minimal shortness of breath yet with progressive hypoxia. Chest discomfort can accompany breathless, warranting prompt investigation if the patient has a history of coronary artery disease (31).

6 The ESC guidance provided updated information for both patients and professionals on how to prevent the spread and reduce the risk from Covid-19 (19)

This pandemic has prompted changes in cardiopulmonary resuscitation (CPR) guidelines whereby, for safety reasons, CPR should not now be initiated by local health care workers who should wait until the arrest team arrives in full PPE, although defibrillation of a shockable rhythm can be undertaken without delay (32,33). The rationale for this ruling is that chest compressions may produce locally high levels of aerosol-generated viral contamination from COVID-19 patients, posing an increased risk of transmission to staff. Alongside this CPR policy change, there has also been an increase in the number of do-not-resuscitate (DNR) orders, often based on the patient’s age, their comorbidity burden, and perceived quality of life. For HF patients with an active implantable cardioverter-defibrillator (ICD) in situ, the significant COVID-19 related hypoxia or myocardial injury directly linked to the SARS-COV-2 virus, may trigger arrhythmias and distressing device activity. Where relevant, and consistent with patients preferences, it is important that professionals discuss ICD deactivation to ensure this is aligned to completion of any DNR order (34).

Facilitating Family involvement during clinical isolation

To avoid the risk of viral transmission, even close family members are now rarely permitted to breach the cordon sanitaire isolating areas where confirmed or suspected COVID-19 patients are being treated. Across hospital care settings, including ITUs, many professionals have described how they now often assume a surrogate role on behalf of the family in supporting the patient. However, actual family involvement can be facilitated remotely with the use of an iPad® or Facetime® (Apple Inc, Cupertino CA, USA) to better ensure patients do not feel isolated. Ideally, such methods of communication should be handled by a designated interlocutor acting on behalf of the clinical team, and prospectively scheduled updates provided to the family, at least on a daily basis (4) Information on local arrangements for such family communication could be disseminated by means of hardcopy leaflets or email (29). Such involvement of the family in contributing to the care process by any means possible may prevent unnecessary future distress should the patient’s condition suddenly deteriorate, or if escalating clinical intervention is deemed inappropriate. Some health professionals feel uncomfortable conversing indirectly in this way, worrying that phone calls may not be the most appropriate means of communication about such complex clinical

7 scenarios. In cases where the patient is unable to speak, through delirium, fever and fatigue, it is important the family or a legal guardian is consulted regarding next steps. VITALTALK is a tool (35) providing useful communication tools to enable professionals to conduct difficult yet vital conversations with patients and family members.

Complicated Bereavement

The harshest element demanded of the clinical isolation of people with COVID-19 is that their loved ones are unable to be with them as they die. This situation flies in the face of the normative perception of a good death, enabling the family to comfort their relative and say their “goodbyes”. While attending staff can sit with patients to ensure they do not die alone, this will provide little consolation to grieving families. Similarly, relatives and faith leaders are unable to carry out the practices and rituals required of some cultures and religions around the time of death, and the form of funeral ceremonies may be truncated, with only a limited number of mourners permitted to attend. We have all baulked at pictures of multiple coffins lying in temporary mortuaries or bodies being carried through cemeteries by unidentifiable individuals in full PPE. Those trying to come to terms with the untimely loss of a family member in these circumstances are likely to be adversely impacted for a prolonged period and may exhibit complicated bereavement. Palliative care can support such individuals, and, as noted in the Compassion in Dying website, it is important to create new expressions of humanity to prevent potential adverse effects on mental health and wellbeing associated with such COVID-19 related difficult deaths (36).

This short paper highlights just some of the evolving care components in the clinical environment arising from the ongoing COVID-19 pandemic which underscore the importance of palliative support for HF patients. Clinical protocols have had to flex to address this challenging global emergency and perhaps some of the lessons learned will ultimately drive positive changes in societal attitudes as well as medical and nursing practice and research.

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