INTRODUCTION
The person at the end of life is understood as having no possibility of cure and knowing that death is near, with the last year of life as the deadline.[1] Dying with dignity is a fundamental human right; it is a subjective experience and a value influenced by others; it means a process of dying with the following characteristics: Dying with minimal suffering from symptoms and limited invasive treatment, maintaining maximum autonomy and independence.[2–5]
In situations of advanced and progressive diseases whose treatments do not allow for reversing their natural evolution, the doctor must direct his action towards the well-being of the patients, avoiding therapeutic futility, namely the use of diagnostic and therapeutic means that can, for themselves, to induce more suffering, without resulting in any benefit.[1] Article 65 the end of life 1-The doctor must respect the patient’s dignity at the end of his life.[6]
End-of-life decisions have needed to make rapidly and constantly evolving. These decisions are influenced by factors such as the judicious allocation of scarce resources, life-threatening acute illness, severe acute respiratory syndrome coronavirus-2 (SARS-CoV-2) disease (COVID-19) disease progression, restrictions on visits and unspoken wishes at the end of life.[5,7–10]
During this social distancing and isolation, restoring meaningful human connection has required creativity and innovation in record time. The great interest in the use of technology in palliative care and end-of-life care to improve communication between isolated patients and their families and between patients and their care providers.[9,10] The objective of this review was to understand how this pandemic season has affected dignity in death and how telemedicine can help improve palliative and end-of-life care.
The investigative question was “How has the use of ICTs during the COVID-19 pandemic affected dignity at the end of life and palliative care?”
MATERIAL AND METHODS
This systematic review was conducted according to the Preferred Reporting Items for Systematic Reviews (PRISMA) criteria and methodology (available at https://www.prisma-statement.org/), depicted in Figure 1. The population, exposure and outcomes (PEO) tool was used to answer the research question (Table 1). In the PubMed/MEDLINE database, we searched for articles that answered the research question and met the additional inclusion and exclusion criteria. We conducted this research between December 2019 and June 2021. This research included original articles written in English, Portuguese and Spanish. The Hawker et al.[8] scale was used to assess the quality of each of the fourteen articles included in this review. This scale contains nine questions, which can be classified as ‘high’, ‘medium’, ‘low’ or ‘very low’ for the quality of the article. If converted into a numerical scale, it is awarded from 1 point (low-quality articles) to 4 points (high-quality articles).
;)
Figure 1: PRISMA diagram of the study selection process
Table 1: Results of the population, exposure and outcomes application, combined with the inclusion and exclusion criteria
The search in the PUBMED/Medline electronic database yielded 2272 results. Of these results, only 1,724 articles were available in free full text. Of these, titles and abstracts were evaluated, of which 20 were left for full reading. After reading them in full, 2 were excluded by the criteria placed in the PRISMA Diagram. In addition to the articles identified through the database, 4 more articles, which met the inclusion criteria, were also included through a search of the reference lists of relevant articles. Thus, the articles (18 articles, PubMed/MEDLINE/SciELO + 4 articles, other sources) were considered potentially eligible for review. The articles read in full were imported into Mendeley Desktop software.
RESULTS
To facilitate the data extraction process and the validation of the results, an extraction form we used includes the title of the article, authors, year of publication, type of study, the objective of the study, description of the population, exposure to which the population was subjected and finally the results. All articles were read by two researchers (PM and AGA). The analysis of the collected data allowed us to find five themes, which are as follows modification of palliative care during the COVID-19 pandemic; end of life during the COVID-19 pandemic; evolution of telemedicine during the COVID-19 Pandemic; The use of telemedicine in palliative care and finally the use of telemedicine and dignity at the end of life (Table 2).[11–32]
Table 2: Extracted data and assessment of the quality of each article
Change in palliative care during the COVID-19 pandemic
Telemedicine technology has become essential to healthcare delivery in the COVID-19 era. However, concerns remain about whether the use of this technology will compromise the privacy and communication that are central to high-quality palliative care.[20]
Meetings can provide a meaningful connection. Redefining the traditional model of palliative care requires humility and courage to embrace change. One must learn to live with the fear that technology will fail and that some families, patients and staff will be disappointed if the virtual care alternative is not ‘as good as’ the ‘gold standard’ and thus allow for mistakes to be made while learning a new model of care.[20]
Thus, the performance of palliative care during the pandemic allowed for: Flexibility and speed of response; ensuring symptom management protocols; training of non-specialists in palliative care; participation in screening; Allocation of resources; use of technology to communicate with patients and careers; information collection systems.[19]
End-of-life care during the COVID-19 pandemic
End-of-life care practices can compromise or enhance the dignity observed by relatives and underwent several changes during the pandemic. Aspects related to an unknown virus and factors derived from preventive measures appeared to be important in the experience of dignity in end-of-life care during the pandemic. However, even though these contextual factors can damage the lived dignity. Most of these aspects were found to be based on human interaction. Isolation at the end of life was experienced as something that no human being should be subjected to, constituting the greatest threat to human dignity. Relatives also reported that health professionals could mitigate preventative measures linked to those closest to them.[11]
Telemedicine developments during the COVID-19 pandemic
The COVID-19 pandemic has promoted telemedicine, a tool that has transformed the delivery of medical services. Various application modalities help overcome the challenges of patient care. Its benefits apply to different areas of medical practice. Together with the guidelines and experiences reported, these benefits should invite health systems to work towards effective and comprehensive implementation of telemedicine in various settings.[13]
Use of telemedicine in palliative care
Through a synthesis of several articles and randomised clinical studies, the use of telemedicine allowed for several aspects (Table 3).[28,32]
Table 3: Telemedicine advantages
However, it is vital to highlight the need to maintain oversight in telemedicine care and to implement solutions to increase the literacy of professionals in the use of these new technologies.[16]
Telemedicine use and dignity at the end of life
Several studies show positive results of the use of telemedicine about dignity at the end of life (Table 4):[12,15,21,22,24–27,29–34]
Table 4: Positive results of the use of telemedicine about dignity at the end of life
However, it is still too early to reach a definitive conclusion, as it is a broad concept, and there are no studies that comprehensively fully access end-of-life patient dignity, nor defined protocols for end-of-life patient follow-up with the use of telemedicine.[20]
DISCUSSION
This systematic review sought to clarify current knowledge on the contribution of technologies to end-of-life dignity during the COVID-19 pandemic. The conduction of this systematic review followed strict methodological standards to minimise the risk of bias.
Included qualitative and quantitative articles were to evidence the experience and perception of individuals to obtain an in-depth view of the populations under study. In addition, all studies included we conducted in-hospital care or palliative care environment, demonstrating the perspective of the patient, family member and health professional and projects implemented in hospitals that allowed a permanent stay of health care. The outcomes resulting from the analysis of the articles on end-of-life dignity present several discordant and sometimes contradictory results. However, after analysing the results, positive aspects are found regarding improving the patient’s autonomy in terms of their care, daily living activities, physical exercise and management and control of symptoms, especially pain.
In Portugal, it estimates that only 20% of adult patients with palliative needs have access to this care. Moreover, in addition, many patients still die with pain at the end of their lives.[33] Although palliative care has received increasing attention as a speciality, ‘more than half of all deaths occur without palliative care or pain relief, and social and health inequalities persist in death’.[34]
Telemedicine can become an essential foundation in the patient’s connection with their doctor and their final desires. However, death is also a process of life and carries a decision burden on how to manage the patient. The technology we currently have allows the control of the patient’s symptoms at home and monitoring their health status. Therefore, through further studies and more investigations to create follow-up protocols in telemedicine for the patient at the end of life in his home and deepen the medical knowledge about the patient’s dignity at the end of life.
As a conclusion and analysis of all themes, the COVID-19 pandemic revealed several difficulties that all health systems presented at the level of palliative care and the end of life of patients. Catastrophes such as the global COVID-19 pandemic put tremendous pressure on health-care systems and patients seeking care. As a result, it is an exciting and revolutionary time for improvements in telemedicine healthcare.
The synthesis of the studies reviewed revealed that telemedicine has enormous potential to improve end-of-life care in terms of quality of life, autonomy and adherence to pharmacological and non-pharmacological treatment. The search was limited to articles published up to 31 June 2021, and due to the rapid advancement of information on this topic, new valuable information for the implementation of telemedicine services may emerge.
In addition, despite the rigorous search strategy, there may be other unidentified studies. Among the strengths of this review is the support of quantitative data whose results either support or oppose the implementation of telemedicine. By focussing on the 22 studies that reported data, we ensured the objectivity of our analyses. In addition, the publications were categorised and analysed according to the medical field, in which telemedicine was used or evaluated, allowing us to generate a comprehensive review of the topic, useful for many stakeholders in the health-care delivery sector worldwide.
Financial support and sponsorship
Nil.
Conflicts of interest
There are no conflicts of interest.
REFERENCES
1. Jeitziner MM, Camenisch SA, Jenni-Moser B, Schefold JC, Zante B. End-of-life care during the
COVID-19 pandemic –What makes the difference?. Nurs Crit Care 2021;26:212-4
2. Muñoz Terrón JM. Vulnerable
dignity, dignified vulnerability: Intertwining of ethical principles in end-of-life care. Int J Environ Res Public Health 2021;18:482
3. Nicolau CV. Conforto dos Doentes em Fim de Vida em Contexto Hospitalar 2013; 127 Available from:
http://hdl.handle.net/10451/11059. [Last access on 2022 Jan 23]
4. Evans CJ, Yorganci E, Lewis P, Koffman J, Stone K, Tunnard I, et al. Processes of consent in research for adults with impaired mental capacity nearing the
end of life: Systematic review and transparent expert consultation (MORECare_Capacity statement). BMC Med 2020;18:221
5. Lin CA, Grunspun H, Nazareth JC, Oliveira RA. Bioethical principles and values during pandemics. Clinics (Sao Paulo) 2020;75:e2154
6. Sanchez EG. Humanizar la muerte en tiempos de cris sanitaria: Morir acompañado, despedirse y recibir atención espiritual. Cuad Bioét 2020;31:203-22
7. Arya A, Buchman S, Gagnon B, Downar J. Pandemic
palliative care: Beyond ventilators and saving lives. CMAJ 2020;192:E400-4
8. Tieman JJ, Swetenham K, Morgan DD, To TH, Currow DC. Using telehealth to support
end of life care in the community: A feasibility study. BMC Palliat Care 2016;15:94
9. Regulamento N. o707/2016. Regulamento de Deontología Médica. Diário Da República II Série, No. 139 (21-07-2016) 2016; 22575-88
10. Radbruch L, Knaul FM, de Lima L, de Joncheere C, Bhadelia A. The key role of
palliative care in response to the
COVID-19 tsunami of suffering. Lancet 2020;395:1467-9
11. BecquéYN, van der Geugten W, van der Heide A, Korfage IJ, Pasman HR, Onwuteaka-Philipsen BD, et al.
Dignity reflections based on experiences of end-of-life care during the first wave of the
COVID-19 pandemic: A qualitative inquiry among bereaved relatives in the Netherlands (the CO-LIVE study). Scand J Caring Sci 2021 doi: 10.1111/scs.13038
12. Vanbutsele G, Van Belle S, Surmont V, De Laat M, Colman R, Eecloo K, et al. The effect of early and systematic integration of
palliative care in oncology on quality of life and health care use near the
end of life: A randomised controlled trial. Eur J Cancer 2020;124:186-93
13. HincapiéMA, Gallego JC, Gempeler A, Piñeros JA, Nasner D, Escobar MF. Implementation and usefulness of
telemedicine during the
COVID-19 pandemic: A scoping review. J Prim Care Community Health 2020;11 doi: 10.1177/2150132720980612
14. Bakitas MA, Dionne-Odom JN, Ejem DB, Wells R, Azuero A, Stockdill ML, et al. Effect of an early
palliative care telehealth intervention vs. usual care on patients with heart failure: The ENABLE CHF-PC Randomized Clinical Trial. JAMA Intern Med 2020;180:1203-13
15. Perna L, Lund S, White N, Minton O. The potential of personalized virtual reality in
palliative care: A feasibility trial. Am J Hosp Palliat Care 2021;38:1488-94
16. Golinelli D, Boetto E, Carullo G, Nuzzolese AG, Landini MP, Fantini MP. Adoption of digital technologies in health care during the
COVID-19 pandemic: Systematic review of early scientific literature. J Med Internet Res 2020;22:e22280
17. Dionne-Odom JN, Ejem DB, Wells R, Azuero A, Stockdill ML, Keebler K, et al. Effects of a telehealth early
palliative care intervention for family caregivers of persons with advanced heart failure: The ENABLE CHF-PC Randomized Clinical Trial. JAMA Netw Open 2020;3:e202583
18. Knoerl R, Phillips CS, Berfield J, Woods H, Acosta M, Tanasijevic A, et al. Lessons learned from the delivery of virtual integrative oncology interventions in clinical practice and research during the
COVID-19 pandemic. Support Care Cancer 2021;29:4191-4
19. Etkind SN, Bone AE, Lovell N, Cripps RL, Harding R, Higginson IJ, et al. The role and response of
palliative care and hospice services in epidemics and pandemics: A rapid review to inform practice during the
COVID-19 pandemic. J Pain Symptom Manage 2020;60:e31-40
20. Ritchey KC, Foy A, Mcardel E, Gruenewald DA. Reinventing
palliative care delivery in the era of
COVID-19: How
telemedicine can support
end of life care. Am J Hosp Palliat Care 2020;37:992-7
21. Gaugler JE, Statz TL, Birkeland RW, Louwagie KW, Peterson CM, Zmora R, et al. The ResidentialCare Transition Module: A single-blinded randomized controlled evaluation of a telehealth support intervention for family caregivers of persons with dementia living in residential long-term care. BMC Geriatr 2020;20:133
22. Pascual-de la Pisa B, Palou-Lobato M, Márquez Calzada C, García-Lozano MJ. Effectiveness of interventions based on
telemedicine on health outcomes in patients with multimorbidity in Primary Care: A systematic review. Aten Primaria 2020;52:759-69
23. Duiverman ML, Vonk JM, Bladder G, van Melle JP, Nieuwenhuis J, Hazenberg A, et al. Home initiation of chronic non-invasive ventilation in COPD patients with chronic hypercapnic respiratory failure: A randomised controlled trial. Thorax 2020;75:244-52
24. Omboni S, Ballatore T, Rizzi F, Tomassini F, Panzeri E, Campolo L. Telehealth at scale can improve chronic disease management in the community during a pandemic: An experience at the time of
COVID-19. PLoS One 2021;16:e0258015
25. Hauser-Ulrich S, Künzli H, Meier-Peterhans D, Kowatsch T. A smartphone-based health care chatbot to promote self-management of chronic pain (SELMA): Pilot randomized controlled trial. JMIR Mhealth Uhealth 2020;8:e15806
26. Kwan RY, Lee D, Lee PH, Tse M, Cheung DS, Thiamwong L, et al. Effects of an mHealth brisk walking intervention on increasing physical activity in older people with cognitive frailty: Pilot randomized controlled trial. JMIR Mhealth Uhealth 2020;8:e16596
27. Quinn KL, Shurrab M, Gitau K, Kavalieratos D, Isenberg SR, Stall NM, et al. Association of receipt of
palliative care interventions with health care use, quality of life, and symptom burden among adults with chronic noncancer illness: A systematic review and meta-analysis. JAMA 2020;324:1439-50
28. Jiang Y, Liu F, Guo J, Sun P, Chen Z, Li J, et al. Evaluating an intervention program using WeChat for patients with chronic obstructive pulmonary disease: Randomized controlled trial. J Med Internet Res 2020;22:e17089
29. Guo X, Gu X, Jiang J, Li H, Duan R, Zhang Y, et al. Ahospital-community-family-based telehealth program for patients with chronic heart failure: Single-arm, prospective feasibility study. JMIR Mhealth Uhealth 2019;7:e13229
30. Bakogiannis C, Tsarouchas A, Mouselimis D, Lazaridis C, Theofillogianakos EK, Billis A, et al. Apatient-oriented app (ThessHF) to improve self-care quality in heart failure: From evidence-based design to pilot study. JMIR Mhealth Uhealth 2021;9:e24271
31. Buyl R, Beogo I, Fobelets M, Deletroz C, Van Landuyt P, Dequanter S, et al. e-Health interventions for healthy aging: A systematic review. Syst Rev 2020;9:128
32. Laver K, Liu E, Clemson L, Davies O, Gray L, Gitlin LN, et al. Does telehealth delivery of a dyadic dementia care program provide a noninferior alternative to face-to-face delivery of the same program?A randomized, controlled trial. Am J Geriatr Psychiatry 2020;28:673-82
33. Cuidados Paliativos em Portugal –A urgência da sua priorização. Hoje! Available from:
https://www.atlasdasaude.pt/artigos/cuidados -paliativos-em-portugal-urgencia-da -sua-priorizacao-hoje. [Last accessed on 2021 Mar 23]
34. Sallnow L, Smith R, Ahmedzai SH, Bhadelia A, Chamberlain C, Cong Y, et al. Lancet Commission on the Value of Death. Report of the Lancet Commission on the Value of Death: bringing death back into life. Lancet 2022;399:837-84
