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On 30 January 2020, the World Health Organisation (WHO) declared the novel coronavirus a public health emergency of international concern. On 11 March 2020 the WHO recognised its pandemic status. New Zealand had its first reported case of COVID-19 on 28 February 2020, one month after the first cases were reported in Europe.

Similar to other hospitals throughout New Zealand, Capital and Coast District Health Board (CCDHB) introduced a restricted visitors policy (RVP) to Wellington Hospital during COVID-19 Alert Levels 3 & 4, from 22 March to 27 April 2020. The restrictions included whānau wanting to visit dying patients. This study explored whānau bereavement experiences when patients died of COVID-19 (1 patient) and non-COVID-19 (21 patients) illnesses in Wellington Hospital during this time. The principal investigator (SD) has a strong background in qualitative research on the experience of deaths in hospitals.[[1–4]] This paper provides a unique contribution to the literature by incorporating a Māori cultural lens. It is anticipated that this research will inform policy for future emergencies, on the care of patients who are dying in hospitals.

The CCDHB RVP stated that no visitors were allowed under Level 4 except on compassionate grounds determined by a senior doctor and ward clinical nurse manager. Under Level 3, one nominated visitor from the patient's bubble was allowed provided they had no COVID-19 contacts or symptoms. CCDHB Whānau Care Service, aware of the potential and likely impact of RVP on all whānau, extended their support services to all patients and families.

As Wallace et al[[5]] have written: "The COVID-19 pandemic has disrupted usual experiences of grief." They refer to the impact on the grieving process for the prohibited visitors of hospitalised patients regardless of COVID-19 diagnosis. As death occurs, the physical, mental and social consequences of social distancing may impact the potential for complicated grief. Disenfranchised grief can also occur when families are unable to grieve in traditional ways, such as a vigil at the bedside as the person is dying, accompanying the body to the hospital mortuary and viewing the body there. Wynne et al[[6]] offer very pertinent advice to countries like New Zealand: “In parts of the world where an opportunity for preparation still exists and as countries emerge from COVID-19, planners must consider care of the dying”.

When starting this study in August 2020, there was little bereavement data from COVID-19 and previous pandemics.[[7]] Now, there is research on bereavement interventions, eg clinical psychologists,[[8]] nurse-led bereavement services,[[9]] ICU senior doctor telephone and video conferences to families[[10]] and the creation of virtual bereavement groups[[11]] as well as research on healthcare workers experiences of RVPs for dying patients and their families.

Katz[[12]] aptly summarises the situation: “This is a bad time to die,” and explains that “death and bereavement are a natural part of life but global pandemics are not. Bereavement is a natural part of life but it can negatively impact on physical and psychological health”. Several other authors also refer to the fact that RVPs have profound effects on the dying and their family members.[[7,8,12,13]] Capozza[[14]] makes an emotional plea that “no one deserves to die alone”, and that “dying alone is not justifiable even in times of infection with a pandemic virus”. Mercadante[[15]] states that during COVID-19, “we are grieving in isolation—something that comes close to an oxymoron in many cultures where mourning is a shared social practice”.

Emerging literature[[12]] on the psychological effects of COVID-19 on death, dying, grief and bereavement reminds us that restrictions to family centred care (FCC) do not only affect those diagnosed with COVID-19. The very restrictions designed to protect against COVID-19 infections are themselves contributing to additional distress and suffering for both the person who is hospitalised as well as their whānau. There is, therefore, a need to prepare for a steep rise in traumatic, disenfranchised and chronic grief.[[7]] There are compelling reasons to expand access of family members to their loved ones as they near the end of life, despite the risk of infection. Separation from the patient, absence of normal death rites and the disruption of social support networks are all risk factors for poor bereavement outcomes. Experiencing a loss, and sometimes multiple losses, in a condition of isolation can be extremely difficult for family members.[[8,13]]

The threats of COVID-19 must be placed in the context of other threats to health including those that are harder to appreciate in the short term.[[7]] It may be too early to know the burden of complex grief for family members who endure the loss of a loved one during the pandemic.[[16]] However, recent studies suggest that COVID-19 bereavement yields much higher grief disorders than natural bereavement—similar to bereavement after suicide or homicide.[[8,13]] In this new era of “e-mourning” and “unmarked deaths”, we are reminded that a spike in COVID-prolonged- and- complicated grief is itself a potential public health crisis. Downar et al[[7]] ask a valuable question: “How much psycho-morbidity is justified by the prevention of a single COVID-19 infection?” RVPs reduce the harm from infection, but increase the chance of harm from isolation or separation. Tate[[17]] and Wiener,[[18]] writing from the perspective of paediatric palliative care, identify tangible limitations of RVPs and write of “the pain of watching families stumble through a stunted grieving process”, as well as the pandemic of moral distress and angst associated with enforcing visitation restrictions, as this burden falls to bedside clinicians.

As this study included six Māori whānau, it is important to understand Māori customs and practices around dying and death. Tikanga is “the set of beliefs associated with practices and procedures to be followed in conducting the affairs of a group or an individual… coming from the accumulated knowledge of generations of Māori”.[[19]] According to Mead,[[19]] in Māori culture a person becomes increasingly tapu as death approaches. Tapu is the most important personal, spiritual attribute. There are therefore important traditional practices and procedures around the person who is dying and upon their death. In Moeke-Maxwell et al,[[20]] pre-pandemic research on bereaved families’ perspectives of end-of-life care, a bicultural Whare Tapa Whā palliative care model is recommended. They note that the “Indigenous model (Whare Tapa Whā) was applicable to both Indigenous and non-Indigenous experiences of end-of-life care for those in advanced age”. Mason Durie’s Te Whare Tapa Whā model, which encompasses the physical (Taha tinana), the spiritual (Taha wairua), the psychological (Taha hinengaro) and family needs (Taha whānau), finds common ground with a holistic palliative model of patient care and their whānau.[[21]] With a bicultural understanding similar to the above,[[19,20,21]] the CCDHB Whānau Care Service offered their support to all patients in the hospital during Levels 3 & 4, irrespective of their cultural affiliation.

Method

Seventy patients died in Wellington Hospital in the period under Alert Levels 3 & 4. Of these, 20 died under General Medicine, the largest group of patients under a particular service. Six patients identifying as Māori also died in this period, and their whānau were also invited to participate in the study.

Next of kin for these 26 patients were contacted by telephone to explain the study. Email or postal written consent was obtained. A range of interview options were offered: days, evenings or weekends; in person, Zoom or telephone; with one or more whānau members; in te reo or English. Whānau were asked to describe their experiences of their relatives dying in hospital, which were recorded and transcribed. Kaihautū (leader) assisted in interviews with six Māori whānau. Interviews were undertaken July to August 2020 with a mean length of 16 minutes and 33 seconds, and ranging from 10 minutes and 45 seconds to 29 minutes and 6 seconds.

The research method draws on a qualitative, descriptive approach with an inductive approach to analysis. This method was deemed appropriate as it is especially amenable to obtaining minimally theorised answers to questions of special relevance to practitioners and policymakers.[[22]] Inductive analysis[[23]] was considered to be most suited to this research as it allowed extensive and varied raw data text to be condensed into a brief, summary format.

Data collection and analysis occurred concurrently. Following verbatim transcription, the transcripts were read and analysed to identify emerging codes, themes and categories (FM, SD).[[24–26]] To avoid potential investigator bias and to validate the findings, all transcripts were reviewed by a third researcher (CG). FM maintained a reflective diary, bracketing potential bias, and discussed the research process regularly with the senior researcher (SD). Ideally, recruitment continues until data saturation, but in this case maximum recruitment occurred at the beginning as the number of patients who had died was established. Inductive thematic saturation was also achieved where saturation is based on the number of new codes or themes emerging.[[27]]

Qualitative research studies investigate a specific issue or phenomenon in a certain group, of a focused locality in a particular context, and hence generalisability of qualitative research findings is usually not an expected attribute.[[28]] In line with that, it cannot be assumed that the findings of this study represented the experiences of all families in New Zealand. However, they may credibly reflect the experiences of many families, given the high participation rate of 22/26 families. Ethical approval was granted by the University of Otago Health Research Ethics Committee – H20/073. Participants were identified by P with sequential numbering; MP was used to indicate Māori whānau. Families and friends were referred to as whānau.

Results

Of the selected 26 deceased patients, two families declined participation and two families were unable to be contacted. Thus, a total of 22 next of kin were interviewed. The demographics for the deceased patients are summarised in Table 1. Two of the inpatient deaths occurred during COVID-19 Alert Level 3 and 20 deaths occurred during COVID Alert Level 4. Only one of the 22 patients was positive for COVID-19 (SARS-CoV-2 PCR).

Several themes emerged from the transcripts. Some of the experiences related to general nursing care rather than specific COVID-related care. Positive and negative experiences relating to the COVID-19 pandemic period are summarised in Table 2 and Table 3, respectively.

View Table 1 & Table 2.

Positive experiences included better access in the hospital environment as compared to residential care facilities, excellent clinical care and gratitude for receiving telephone calls from the research team. For many of the families, it was advantageous to be transferred from a residential care facility to the hospital at the end of life because of stricter RVPs in the residential care facility. The telephone call from the research team was perceived as an extension of bereavement care provided by the hospital.

View Table 3.

Negative experiences related to clinical care, the patient being alone at the time of death, poor communication from the treating team, delays in turn-around-time of COVID-19 test results and the door screening process for visitors. Limitation of access to visitation was a major theme identified in the study. Video visits by Zoom for whānau were used in ICU for the patient who died of COVID-19, but not offered for patients dying on the wards.

Although the CCDHB had a RVP, some families perceived that they got in “by sneaking in”, by accompanying the ambulance staff, being fortunate in having a particular doctor advocate for them or being on particular wards and by having younger nurses in attendance who were more relaxed about the rules. From the families’ descriptions, there did not appear to be a cohesive application of RVP between the different wards. Two participants (MP21 and P1) suggested making access at the front door easier by giving the family of a dying patient "a laminated red card so they wouldn’t be embarrassed (by being asked repeatedly); maybe separate table like when you go to the polling booth, for those people that are in the process of passing away”.

Table 4 summarises experiences described by Māori whānau. Themes included compliments regarding clinical care, being rushed to leave resulting in their relative being alone and issues specific to their cultural preferences, eg karakia, having staff familiar with tikanga and assistance from Whānau Care Services.

View Table 4.

Discussion

This COVID-19 lockdown research provided us with an opportunity to look at what recently bereaved people need. Our conversations show their needs were not much different to what people always need when their relative is dying in hospital.[[1–4]] The inconsistent practice regarding access to the hospital may have been due to the difficulty in filtering information down to staff as the RVP changed rapidly. The high response rate to our telephone calls and the gratitude expressed by participants demonstrated the value of hospital follow-up for bereaved whānau.

The hospital services usually offered to bereaved families were not offered to the families we spoke to. The Te Wai symbol usually placed on the door where a patient has died, and subsequently offered to families to take home, as well as the ward bereavement quilts normally used to cover the mortuary trolley, were all removed. The CCDHB Te Wai bereavement symbol is a reminder of the respect and solemnity that the death of a person requires in an acute service. The bereavement quilt, which is also part of the CCDHB Te Wai process, covering the metal mortuary trolley (previously described by families as a “meat van”) [[2]] adds dignity to the transfer of the patient’s body to the mortuary. These practices were suspended during Levels 3 & 4 due to the perceived risk of infection.

Whānau Care Services were offered to only one of the six Māori whānau. The Whānau Care team’s offer to support all families was communicated by way of the CCDHB intranet, but clinical staff seemed unaware of this offer. Experiences of Māori whānau in this study supports the importance of workforce initiatives that reflect the demographics and cultures of our community. As Moeke-Maxwell et al[[20]] have said “culture is a useful framework to understand peoples’ unique needs and is particularly relevant for those nearing death”. The significance of these practices was highlighted by the efforts of MP26’s niece (see Table 4) not to abandon her mother’s body at the funeral home, which is consistent with tikanga.[[19,20,21,29,30]] One of the important traditional Māori practices is the unbroken accompaniment of the dying person and the body. The RVP adversely affected these practices. Other tikanga practices including washing the body, use of water for blessing the room and recitation of karakia were offered to some but not all Māori whānau in this study. As in our study, Moeke-Maxwell et al[[20]] found that acts of kindness from health professionals helped to soften the experience of bereavement, as did the accompaniment of the dying by family or by a health professional, and being able to stay with the older person when they were dying.

Our findings, in a country where deaths during lockdown were mostly not COVID-related, mirror the findings in countries where COVID-19 deaths were common. The needs that emerged for family members in a similar Italian study[[31]] included the need for information, the need for reassurance, to be listened to and supported, to preserve a relationship with their loved ones, and the need to be supported in the grieving process. Lissoni et al[[31]] describe how telephone conversations from physicians at least once a day and at an agreed time kept families informed. Borghi et al[[8]] recommend telephone call follow-ups to families after the death, describing a telephone-based early psychological intervention by clinical psychologists to families of hospitalised patients who died with COVID-19, two or three days after the death and one week to two months later to prevent or treat complicated grief.

Exploring the importance of palliative care in the COVID-19 pandemic, Wynne et al[[6]] remind us that: “palliative care is a field defined by its ability to face some of the darkest and most frightening aspects of life and still preserves our hope and humanity.” In the COVID-19 pandemic, palliative care has received unprecedented levels of societal attention. Unfortunately, this has not been enough to prevent patients from dying alone or to enable relatives to say goodbye. Fadul[[32]] says that palliative care considerations needed to be incorporated into COVID-19 pandemic planning: one of which is bereavement support for family members who are likely to be isolated from patients at the moments of death.

Andrist[[33]] notes that RVP has been widely implemented as a means of decreasing the transmission of COVID-19: “This must not be the only good that quality healthcare must aim to achieve. Severely RVP undermines our ability to provide FCC particularly at end of life and during critical illness. The enforcement of these policies consequently increases the risk of moral distress and injury for providers”. Feder[[34]] surveyed bereaved families and concluded that communication between patients, families and healthcare teams at the end of life remains critically important during RVP. The importance of establishing final contact before the patient died was highlighted by Hanna et al.[[35]] Strategies include prioritising virtual connectedness and creating alternative opportunities for relatives to say goodbye. Wallace et al[[5]] state that: “we cannot underestimate the power of sitting alongside a loved one as they die, having a shared space to reflect on life and a relationship and a real chance to say goodbye”. Plunkett et al[[36]] describe the RVP as "draconian health service rules" placing an immediate and ongoing burden on clinicians and families alike, negatively impacting the quality of dying with the sole visitor at the bedside being without the comfort of a companion. They highlight the moral injury suffered by clinicians enforcing severe restrictions and conclude that one size does not fit all during a global crisis.

We recommend that specific plans related to care of patients dying from COVID-19 and non-COVID-19 illnesses, care of the deceased and care of their whānau throughout the process—including bereavement—be established and prioritised in hospital pandemic policy. Plans should include the provision of access cards for whānau of dying patients; daily telephone/Zoom communication with an update by the doctor for whānau; e-mailing of photos of doctors/nurses and the room to whānau; allowing two people rather than one at the bedside; establishing a bereavement whānau coordinator to keep in touch with whānau of dying patients; and follow-up telephone calls to whānau after the death. Tikanga around dying and death for Māori whānau must be known, understood and accommodated. During a pandemic, cutting back on support structures for the dying and bereaved will cause significant distress and harm. Reflecting on experiences of whānau will enable us to create wiser, more compassionate policies now for future pandemic situations.

Limitations of this study

Although New Zealand’s death rate from COVID-19 was low, we adopted hospital RVPs similar to many countries. For that reason, exploring families’ experiences in New Zealand provides valuable information.

We restricted our research to patients who died under General Medicine as the principal researcher is a General Medicine physician. In addition, General Medicine had the largest percentage of deaths. We recognise that the experience of families on other services may be different, for example oncology or surgical wards.

As this was collaborative research with the Whānau Care team, we identified in addition six Māori patients who died during that period. We did not purposefully seek out other cultural groups such as Pacifica peoples. We did this because, in response to the rapidly changing status of the pandemic, the Whānau Care team rapidly adapted its service delivery highlighting the importance of patient whānau centred care for all during and after death.

Summary

Abstract

Aim

A qualitative exploration of the experience of whānau whose relatives died in an acute hospital setting during Levels 3 & 4 of the 2020 COVID-19 pandemic in Aotearoa New Zealand.

Method

Next of kin for 22 patients who had died in Wellington Hospital during Levels 3 & 4 of the 2020 COVID-19 pandemic (16/22 under General Medicine with an additional 6/22 who identified as Māori) from a total of 70 hospital deaths were interviewed by phone in August 2020. Whānau were asked to describe their experience of a relative dying. Following transcription, thematic content analysis was undertaken by the researchers.

Results

Whānau provided poignant and heartbreaking accounts of their experiences. Researchers broadly categorised their feedback as positive or negative. The dominant factors that contributed to positive experiences for whānau were excellence in nursing and medical care. Māori whānau benefitted from hospital staff understanding the importance of tikanga Māori relating to dying and death practices, and incorporating these into the care of the patient. Factors that contributed to negative experiences for whānau included separation from loved ones at the time of death. The findings underscore the importance of whānau accompanying the dying patient, and non-abandonment. Other negative experiences were not having time to say goodbye, and insufficient communication with medical personnel. There were also misunderstandings and uncertainty about the changing hospital rules around isolation with great variability in interpretation by different staff.

Conclusion

Pandemic policies should prioritise the needs of whānau and hospitalised patients who are dying of any illness, including: daily telephone/Zoom updates by doctors and/or nurses with whānau; emailing photos to whānau of doctors/nurses/patient’s room; having a bereavement whānau coordinator keeping in touch with relatives of patients who are dying; making follow-up telephone calls to whānau after the death; prioritisation of fast COVID-19 testing if there is a possibility that the patient will die; ensuring availability of Māori healthcare staff to support Māori patients and whānau; and observation of Māori tikanga around dying and death for Māori and their whānau.

Author Information

Sinead Donnelly: Consultant physician, Wellington Hospital, Wellington. Fiona McDonald: House Surgeon, Hawkes Bay Hospital. Cheryl Goodyer: Manager Capability, Maori Development Group, Wellington Hospital.

Acknowledgements

Correspondence

Sinead Donnelly: Wellington Hospital, Private Bag 7902, Wellington, 6242

Correspondence Email

Sinead.donnelly@ccdhb.org.nz

Competing Interests

Nil

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On 30 January 2020, the World Health Organisation (WHO) declared the novel coronavirus a public health emergency of international concern. On 11 March 2020 the WHO recognised its pandemic status. New Zealand had its first reported case of COVID-19 on 28 February 2020, one month after the first cases were reported in Europe.

Similar to other hospitals throughout New Zealand, Capital and Coast District Health Board (CCDHB) introduced a restricted visitors policy (RVP) to Wellington Hospital during COVID-19 Alert Levels 3 & 4, from 22 March to 27 April 2020. The restrictions included whānau wanting to visit dying patients. This study explored whānau bereavement experiences when patients died of COVID-19 (1 patient) and non-COVID-19 (21 patients) illnesses in Wellington Hospital during this time. The principal investigator (SD) has a strong background in qualitative research on the experience of deaths in hospitals.[[1–4]] This paper provides a unique contribution to the literature by incorporating a Māori cultural lens. It is anticipated that this research will inform policy for future emergencies, on the care of patients who are dying in hospitals.

The CCDHB RVP stated that no visitors were allowed under Level 4 except on compassionate grounds determined by a senior doctor and ward clinical nurse manager. Under Level 3, one nominated visitor from the patient's bubble was allowed provided they had no COVID-19 contacts or symptoms. CCDHB Whānau Care Service, aware of the potential and likely impact of RVP on all whānau, extended their support services to all patients and families.

As Wallace et al[[5]] have written: "The COVID-19 pandemic has disrupted usual experiences of grief." They refer to the impact on the grieving process for the prohibited visitors of hospitalised patients regardless of COVID-19 diagnosis. As death occurs, the physical, mental and social consequences of social distancing may impact the potential for complicated grief. Disenfranchised grief can also occur when families are unable to grieve in traditional ways, such as a vigil at the bedside as the person is dying, accompanying the body to the hospital mortuary and viewing the body there. Wynne et al[[6]] offer very pertinent advice to countries like New Zealand: “In parts of the world where an opportunity for preparation still exists and as countries emerge from COVID-19, planners must consider care of the dying”.

When starting this study in August 2020, there was little bereavement data from COVID-19 and previous pandemics.[[7]] Now, there is research on bereavement interventions, eg clinical psychologists,[[8]] nurse-led bereavement services,[[9]] ICU senior doctor telephone and video conferences to families[[10]] and the creation of virtual bereavement groups[[11]] as well as research on healthcare workers experiences of RVPs for dying patients and their families.

Katz[[12]] aptly summarises the situation: “This is a bad time to die,” and explains that “death and bereavement are a natural part of life but global pandemics are not. Bereavement is a natural part of life but it can negatively impact on physical and psychological health”. Several other authors also refer to the fact that RVPs have profound effects on the dying and their family members.[[7,8,12,13]] Capozza[[14]] makes an emotional plea that “no one deserves to die alone”, and that “dying alone is not justifiable even in times of infection with a pandemic virus”. Mercadante[[15]] states that during COVID-19, “we are grieving in isolation—something that comes close to an oxymoron in many cultures where mourning is a shared social practice”.

Emerging literature[[12]] on the psychological effects of COVID-19 on death, dying, grief and bereavement reminds us that restrictions to family centred care (FCC) do not only affect those diagnosed with COVID-19. The very restrictions designed to protect against COVID-19 infections are themselves contributing to additional distress and suffering for both the person who is hospitalised as well as their whānau. There is, therefore, a need to prepare for a steep rise in traumatic, disenfranchised and chronic grief.[[7]] There are compelling reasons to expand access of family members to their loved ones as they near the end of life, despite the risk of infection. Separation from the patient, absence of normal death rites and the disruption of social support networks are all risk factors for poor bereavement outcomes. Experiencing a loss, and sometimes multiple losses, in a condition of isolation can be extremely difficult for family members.[[8,13]]

The threats of COVID-19 must be placed in the context of other threats to health including those that are harder to appreciate in the short term.[[7]] It may be too early to know the burden of complex grief for family members who endure the loss of a loved one during the pandemic.[[16]] However, recent studies suggest that COVID-19 bereavement yields much higher grief disorders than natural bereavement—similar to bereavement after suicide or homicide.[[8,13]] In this new era of “e-mourning” and “unmarked deaths”, we are reminded that a spike in COVID-prolonged- and- complicated grief is itself a potential public health crisis. Downar et al[[7]] ask a valuable question: “How much psycho-morbidity is justified by the prevention of a single COVID-19 infection?” RVPs reduce the harm from infection, but increase the chance of harm from isolation or separation. Tate[[17]] and Wiener,[[18]] writing from the perspective of paediatric palliative care, identify tangible limitations of RVPs and write of “the pain of watching families stumble through a stunted grieving process”, as well as the pandemic of moral distress and angst associated with enforcing visitation restrictions, as this burden falls to bedside clinicians.

As this study included six Māori whānau, it is important to understand Māori customs and practices around dying and death. Tikanga is “the set of beliefs associated with practices and procedures to be followed in conducting the affairs of a group or an individual… coming from the accumulated knowledge of generations of Māori”.[[19]] According to Mead,[[19]] in Māori culture a person becomes increasingly tapu as death approaches. Tapu is the most important personal, spiritual attribute. There are therefore important traditional practices and procedures around the person who is dying and upon their death. In Moeke-Maxwell et al,[[20]] pre-pandemic research on bereaved families’ perspectives of end-of-life care, a bicultural Whare Tapa Whā palliative care model is recommended. They note that the “Indigenous model (Whare Tapa Whā) was applicable to both Indigenous and non-Indigenous experiences of end-of-life care for those in advanced age”. Mason Durie’s Te Whare Tapa Whā model, which encompasses the physical (Taha tinana), the spiritual (Taha wairua), the psychological (Taha hinengaro) and family needs (Taha whānau), finds common ground with a holistic palliative model of patient care and their whānau.[[21]] With a bicultural understanding similar to the above,[[19,20,21]] the CCDHB Whānau Care Service offered their support to all patients in the hospital during Levels 3 & 4, irrespective of their cultural affiliation.

Method

Seventy patients died in Wellington Hospital in the period under Alert Levels 3 & 4. Of these, 20 died under General Medicine, the largest group of patients under a particular service. Six patients identifying as Māori also died in this period, and their whānau were also invited to participate in the study.

Next of kin for these 26 patients were contacted by telephone to explain the study. Email or postal written consent was obtained. A range of interview options were offered: days, evenings or weekends; in person, Zoom or telephone; with one or more whānau members; in te reo or English. Whānau were asked to describe their experiences of their relatives dying in hospital, which were recorded and transcribed. Kaihautū (leader) assisted in interviews with six Māori whānau. Interviews were undertaken July to August 2020 with a mean length of 16 minutes and 33 seconds, and ranging from 10 minutes and 45 seconds to 29 minutes and 6 seconds.

The research method draws on a qualitative, descriptive approach with an inductive approach to analysis. This method was deemed appropriate as it is especially amenable to obtaining minimally theorised answers to questions of special relevance to practitioners and policymakers.[[22]] Inductive analysis[[23]] was considered to be most suited to this research as it allowed extensive and varied raw data text to be condensed into a brief, summary format.

Data collection and analysis occurred concurrently. Following verbatim transcription, the transcripts were read and analysed to identify emerging codes, themes and categories (FM, SD).[[24–26]] To avoid potential investigator bias and to validate the findings, all transcripts were reviewed by a third researcher (CG). FM maintained a reflective diary, bracketing potential bias, and discussed the research process regularly with the senior researcher (SD). Ideally, recruitment continues until data saturation, but in this case maximum recruitment occurred at the beginning as the number of patients who had died was established. Inductive thematic saturation was also achieved where saturation is based on the number of new codes or themes emerging.[[27]]

Qualitative research studies investigate a specific issue or phenomenon in a certain group, of a focused locality in a particular context, and hence generalisability of qualitative research findings is usually not an expected attribute.[[28]] In line with that, it cannot be assumed that the findings of this study represented the experiences of all families in New Zealand. However, they may credibly reflect the experiences of many families, given the high participation rate of 22/26 families. Ethical approval was granted by the University of Otago Health Research Ethics Committee – H20/073. Participants were identified by P with sequential numbering; MP was used to indicate Māori whānau. Families and friends were referred to as whānau.

Results

Of the selected 26 deceased patients, two families declined participation and two families were unable to be contacted. Thus, a total of 22 next of kin were interviewed. The demographics for the deceased patients are summarised in Table 1. Two of the inpatient deaths occurred during COVID-19 Alert Level 3 and 20 deaths occurred during COVID Alert Level 4. Only one of the 22 patients was positive for COVID-19 (SARS-CoV-2 PCR).

Several themes emerged from the transcripts. Some of the experiences related to general nursing care rather than specific COVID-related care. Positive and negative experiences relating to the COVID-19 pandemic period are summarised in Table 2 and Table 3, respectively.

View Table 1 & Table 2.

Positive experiences included better access in the hospital environment as compared to residential care facilities, excellent clinical care and gratitude for receiving telephone calls from the research team. For many of the families, it was advantageous to be transferred from a residential care facility to the hospital at the end of life because of stricter RVPs in the residential care facility. The telephone call from the research team was perceived as an extension of bereavement care provided by the hospital.

View Table 3.

Negative experiences related to clinical care, the patient being alone at the time of death, poor communication from the treating team, delays in turn-around-time of COVID-19 test results and the door screening process for visitors. Limitation of access to visitation was a major theme identified in the study. Video visits by Zoom for whānau were used in ICU for the patient who died of COVID-19, but not offered for patients dying on the wards.

Although the CCDHB had a RVP, some families perceived that they got in “by sneaking in”, by accompanying the ambulance staff, being fortunate in having a particular doctor advocate for them or being on particular wards and by having younger nurses in attendance who were more relaxed about the rules. From the families’ descriptions, there did not appear to be a cohesive application of RVP between the different wards. Two participants (MP21 and P1) suggested making access at the front door easier by giving the family of a dying patient "a laminated red card so they wouldn’t be embarrassed (by being asked repeatedly); maybe separate table like when you go to the polling booth, for those people that are in the process of passing away”.

Table 4 summarises experiences described by Māori whānau. Themes included compliments regarding clinical care, being rushed to leave resulting in their relative being alone and issues specific to their cultural preferences, eg karakia, having staff familiar with tikanga and assistance from Whānau Care Services.

View Table 4.

Discussion

This COVID-19 lockdown research provided us with an opportunity to look at what recently bereaved people need. Our conversations show their needs were not much different to what people always need when their relative is dying in hospital.[[1–4]] The inconsistent practice regarding access to the hospital may have been due to the difficulty in filtering information down to staff as the RVP changed rapidly. The high response rate to our telephone calls and the gratitude expressed by participants demonstrated the value of hospital follow-up for bereaved whānau.

The hospital services usually offered to bereaved families were not offered to the families we spoke to. The Te Wai symbol usually placed on the door where a patient has died, and subsequently offered to families to take home, as well as the ward bereavement quilts normally used to cover the mortuary trolley, were all removed. The CCDHB Te Wai bereavement symbol is a reminder of the respect and solemnity that the death of a person requires in an acute service. The bereavement quilt, which is also part of the CCDHB Te Wai process, covering the metal mortuary trolley (previously described by families as a “meat van”) [[2]] adds dignity to the transfer of the patient’s body to the mortuary. These practices were suspended during Levels 3 & 4 due to the perceived risk of infection.

Whānau Care Services were offered to only one of the six Māori whānau. The Whānau Care team’s offer to support all families was communicated by way of the CCDHB intranet, but clinical staff seemed unaware of this offer. Experiences of Māori whānau in this study supports the importance of workforce initiatives that reflect the demographics and cultures of our community. As Moeke-Maxwell et al[[20]] have said “culture is a useful framework to understand peoples’ unique needs and is particularly relevant for those nearing death”. The significance of these practices was highlighted by the efforts of MP26’s niece (see Table 4) not to abandon her mother’s body at the funeral home, which is consistent with tikanga.[[19,20,21,29,30]] One of the important traditional Māori practices is the unbroken accompaniment of the dying person and the body. The RVP adversely affected these practices. Other tikanga practices including washing the body, use of water for blessing the room and recitation of karakia were offered to some but not all Māori whānau in this study. As in our study, Moeke-Maxwell et al[[20]] found that acts of kindness from health professionals helped to soften the experience of bereavement, as did the accompaniment of the dying by family or by a health professional, and being able to stay with the older person when they were dying.

Our findings, in a country where deaths during lockdown were mostly not COVID-related, mirror the findings in countries where COVID-19 deaths were common. The needs that emerged for family members in a similar Italian study[[31]] included the need for information, the need for reassurance, to be listened to and supported, to preserve a relationship with their loved ones, and the need to be supported in the grieving process. Lissoni et al[[31]] describe how telephone conversations from physicians at least once a day and at an agreed time kept families informed. Borghi et al[[8]] recommend telephone call follow-ups to families after the death, describing a telephone-based early psychological intervention by clinical psychologists to families of hospitalised patients who died with COVID-19, two or three days after the death and one week to two months later to prevent or treat complicated grief.

Exploring the importance of palliative care in the COVID-19 pandemic, Wynne et al[[6]] remind us that: “palliative care is a field defined by its ability to face some of the darkest and most frightening aspects of life and still preserves our hope and humanity.” In the COVID-19 pandemic, palliative care has received unprecedented levels of societal attention. Unfortunately, this has not been enough to prevent patients from dying alone or to enable relatives to say goodbye. Fadul[[32]] says that palliative care considerations needed to be incorporated into COVID-19 pandemic planning: one of which is bereavement support for family members who are likely to be isolated from patients at the moments of death.

Andrist[[33]] notes that RVP has been widely implemented as a means of decreasing the transmission of COVID-19: “This must not be the only good that quality healthcare must aim to achieve. Severely RVP undermines our ability to provide FCC particularly at end of life and during critical illness. The enforcement of these policies consequently increases the risk of moral distress and injury for providers”. Feder[[34]] surveyed bereaved families and concluded that communication between patients, families and healthcare teams at the end of life remains critically important during RVP. The importance of establishing final contact before the patient died was highlighted by Hanna et al.[[35]] Strategies include prioritising virtual connectedness and creating alternative opportunities for relatives to say goodbye. Wallace et al[[5]] state that: “we cannot underestimate the power of sitting alongside a loved one as they die, having a shared space to reflect on life and a relationship and a real chance to say goodbye”. Plunkett et al[[36]] describe the RVP as "draconian health service rules" placing an immediate and ongoing burden on clinicians and families alike, negatively impacting the quality of dying with the sole visitor at the bedside being without the comfort of a companion. They highlight the moral injury suffered by clinicians enforcing severe restrictions and conclude that one size does not fit all during a global crisis.

We recommend that specific plans related to care of patients dying from COVID-19 and non-COVID-19 illnesses, care of the deceased and care of their whānau throughout the process—including bereavement—be established and prioritised in hospital pandemic policy. Plans should include the provision of access cards for whānau of dying patients; daily telephone/Zoom communication with an update by the doctor for whānau; e-mailing of photos of doctors/nurses and the room to whānau; allowing two people rather than one at the bedside; establishing a bereavement whānau coordinator to keep in touch with whānau of dying patients; and follow-up telephone calls to whānau after the death. Tikanga around dying and death for Māori whānau must be known, understood and accommodated. During a pandemic, cutting back on support structures for the dying and bereaved will cause significant distress and harm. Reflecting on experiences of whānau will enable us to create wiser, more compassionate policies now for future pandemic situations.

Limitations of this study

Although New Zealand’s death rate from COVID-19 was low, we adopted hospital RVPs similar to many countries. For that reason, exploring families’ experiences in New Zealand provides valuable information.

We restricted our research to patients who died under General Medicine as the principal researcher is a General Medicine physician. In addition, General Medicine had the largest percentage of deaths. We recognise that the experience of families on other services may be different, for example oncology or surgical wards.

As this was collaborative research with the Whānau Care team, we identified in addition six Māori patients who died during that period. We did not purposefully seek out other cultural groups such as Pacifica peoples. We did this because, in response to the rapidly changing status of the pandemic, the Whānau Care team rapidly adapted its service delivery highlighting the importance of patient whānau centred care for all during and after death.

Summary

Abstract

Aim

A qualitative exploration of the experience of whānau whose relatives died in an acute hospital setting during Levels 3 & 4 of the 2020 COVID-19 pandemic in Aotearoa New Zealand.

Method

Next of kin for 22 patients who had died in Wellington Hospital during Levels 3 & 4 of the 2020 COVID-19 pandemic (16/22 under General Medicine with an additional 6/22 who identified as Māori) from a total of 70 hospital deaths were interviewed by phone in August 2020. Whānau were asked to describe their experience of a relative dying. Following transcription, thematic content analysis was undertaken by the researchers.

Results

Whānau provided poignant and heartbreaking accounts of their experiences. Researchers broadly categorised their feedback as positive or negative. The dominant factors that contributed to positive experiences for whānau were excellence in nursing and medical care. Māori whānau benefitted from hospital staff understanding the importance of tikanga Māori relating to dying and death practices, and incorporating these into the care of the patient. Factors that contributed to negative experiences for whānau included separation from loved ones at the time of death. The findings underscore the importance of whānau accompanying the dying patient, and non-abandonment. Other negative experiences were not having time to say goodbye, and insufficient communication with medical personnel. There were also misunderstandings and uncertainty about the changing hospital rules around isolation with great variability in interpretation by different staff.

Conclusion

Pandemic policies should prioritise the needs of whānau and hospitalised patients who are dying of any illness, including: daily telephone/Zoom updates by doctors and/or nurses with whānau; emailing photos to whānau of doctors/nurses/patient’s room; having a bereavement whānau coordinator keeping in touch with relatives of patients who are dying; making follow-up telephone calls to whānau after the death; prioritisation of fast COVID-19 testing if there is a possibility that the patient will die; ensuring availability of Māori healthcare staff to support Māori patients and whānau; and observation of Māori tikanga around dying and death for Māori and their whānau.

Author Information

Sinead Donnelly: Consultant physician, Wellington Hospital, Wellington. Fiona McDonald: House Surgeon, Hawkes Bay Hospital. Cheryl Goodyer: Manager Capability, Maori Development Group, Wellington Hospital.

Acknowledgements

Correspondence

Sinead Donnelly: Wellington Hospital, Private Bag 7902, Wellington, 6242

Correspondence Email

Sinead.donnelly@ccdhb.org.nz

Competing Interests

Nil

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On 30 January 2020, the World Health Organisation (WHO) declared the novel coronavirus a public health emergency of international concern. On 11 March 2020 the WHO recognised its pandemic status. New Zealand had its first reported case of COVID-19 on 28 February 2020, one month after the first cases were reported in Europe.

Similar to other hospitals throughout New Zealand, Capital and Coast District Health Board (CCDHB) introduced a restricted visitors policy (RVP) to Wellington Hospital during COVID-19 Alert Levels 3 & 4, from 22 March to 27 April 2020. The restrictions included whānau wanting to visit dying patients. This study explored whānau bereavement experiences when patients died of COVID-19 (1 patient) and non-COVID-19 (21 patients) illnesses in Wellington Hospital during this time. The principal investigator (SD) has a strong background in qualitative research on the experience of deaths in hospitals.[[1–4]] This paper provides a unique contribution to the literature by incorporating a Māori cultural lens. It is anticipated that this research will inform policy for future emergencies, on the care of patients who are dying in hospitals.

The CCDHB RVP stated that no visitors were allowed under Level 4 except on compassionate grounds determined by a senior doctor and ward clinical nurse manager. Under Level 3, one nominated visitor from the patient's bubble was allowed provided they had no COVID-19 contacts or symptoms. CCDHB Whānau Care Service, aware of the potential and likely impact of RVP on all whānau, extended their support services to all patients and families.

As Wallace et al[[5]] have written: "The COVID-19 pandemic has disrupted usual experiences of grief." They refer to the impact on the grieving process for the prohibited visitors of hospitalised patients regardless of COVID-19 diagnosis. As death occurs, the physical, mental and social consequences of social distancing may impact the potential for complicated grief. Disenfranchised grief can also occur when families are unable to grieve in traditional ways, such as a vigil at the bedside as the person is dying, accompanying the body to the hospital mortuary and viewing the body there. Wynne et al[[6]] offer very pertinent advice to countries like New Zealand: “In parts of the world where an opportunity for preparation still exists and as countries emerge from COVID-19, planners must consider care of the dying”.

When starting this study in August 2020, there was little bereavement data from COVID-19 and previous pandemics.[[7]] Now, there is research on bereavement interventions, eg clinical psychologists,[[8]] nurse-led bereavement services,[[9]] ICU senior doctor telephone and video conferences to families[[10]] and the creation of virtual bereavement groups[[11]] as well as research on healthcare workers experiences of RVPs for dying patients and their families.

Katz[[12]] aptly summarises the situation: “This is a bad time to die,” and explains that “death and bereavement are a natural part of life but global pandemics are not. Bereavement is a natural part of life but it can negatively impact on physical and psychological health”. Several other authors also refer to the fact that RVPs have profound effects on the dying and their family members.[[7,8,12,13]] Capozza[[14]] makes an emotional plea that “no one deserves to die alone”, and that “dying alone is not justifiable even in times of infection with a pandemic virus”. Mercadante[[15]] states that during COVID-19, “we are grieving in isolation—something that comes close to an oxymoron in many cultures where mourning is a shared social practice”.

Emerging literature[[12]] on the psychological effects of COVID-19 on death, dying, grief and bereavement reminds us that restrictions to family centred care (FCC) do not only affect those diagnosed with COVID-19. The very restrictions designed to protect against COVID-19 infections are themselves contributing to additional distress and suffering for both the person who is hospitalised as well as their whānau. There is, therefore, a need to prepare for a steep rise in traumatic, disenfranchised and chronic grief.[[7]] There are compelling reasons to expand access of family members to their loved ones as they near the end of life, despite the risk of infection. Separation from the patient, absence of normal death rites and the disruption of social support networks are all risk factors for poor bereavement outcomes. Experiencing a loss, and sometimes multiple losses, in a condition of isolation can be extremely difficult for family members.[[8,13]]

The threats of COVID-19 must be placed in the context of other threats to health including those that are harder to appreciate in the short term.[[7]] It may be too early to know the burden of complex grief for family members who endure the loss of a loved one during the pandemic.[[16]] However, recent studies suggest that COVID-19 bereavement yields much higher grief disorders than natural bereavement—similar to bereavement after suicide or homicide.[[8,13]] In this new era of “e-mourning” and “unmarked deaths”, we are reminded that a spike in COVID-prolonged- and- complicated grief is itself a potential public health crisis. Downar et al[[7]] ask a valuable question: “How much psycho-morbidity is justified by the prevention of a single COVID-19 infection?” RVPs reduce the harm from infection, but increase the chance of harm from isolation or separation. Tate[[17]] and Wiener,[[18]] writing from the perspective of paediatric palliative care, identify tangible limitations of RVPs and write of “the pain of watching families stumble through a stunted grieving process”, as well as the pandemic of moral distress and angst associated with enforcing visitation restrictions, as this burden falls to bedside clinicians.

As this study included six Māori whānau, it is important to understand Māori customs and practices around dying and death. Tikanga is “the set of beliefs associated with practices and procedures to be followed in conducting the affairs of a group or an individual… coming from the accumulated knowledge of generations of Māori”.[[19]] According to Mead,[[19]] in Māori culture a person becomes increasingly tapu as death approaches. Tapu is the most important personal, spiritual attribute. There are therefore important traditional practices and procedures around the person who is dying and upon their death. In Moeke-Maxwell et al,[[20]] pre-pandemic research on bereaved families’ perspectives of end-of-life care, a bicultural Whare Tapa Whā palliative care model is recommended. They note that the “Indigenous model (Whare Tapa Whā) was applicable to both Indigenous and non-Indigenous experiences of end-of-life care for those in advanced age”. Mason Durie’s Te Whare Tapa Whā model, which encompasses the physical (Taha tinana), the spiritual (Taha wairua), the psychological (Taha hinengaro) and family needs (Taha whānau), finds common ground with a holistic palliative model of patient care and their whānau.[[21]] With a bicultural understanding similar to the above,[[19,20,21]] the CCDHB Whānau Care Service offered their support to all patients in the hospital during Levels 3 & 4, irrespective of their cultural affiliation.

Method

Seventy patients died in Wellington Hospital in the period under Alert Levels 3 & 4. Of these, 20 died under General Medicine, the largest group of patients under a particular service. Six patients identifying as Māori also died in this period, and their whānau were also invited to participate in the study.

Next of kin for these 26 patients were contacted by telephone to explain the study. Email or postal written consent was obtained. A range of interview options were offered: days, evenings or weekends; in person, Zoom or telephone; with one or more whānau members; in te reo or English. Whānau were asked to describe their experiences of their relatives dying in hospital, which were recorded and transcribed. Kaihautū (leader) assisted in interviews with six Māori whānau. Interviews were undertaken July to August 2020 with a mean length of 16 minutes and 33 seconds, and ranging from 10 minutes and 45 seconds to 29 minutes and 6 seconds.

The research method draws on a qualitative, descriptive approach with an inductive approach to analysis. This method was deemed appropriate as it is especially amenable to obtaining minimally theorised answers to questions of special relevance to practitioners and policymakers.[[22]] Inductive analysis[[23]] was considered to be most suited to this research as it allowed extensive and varied raw data text to be condensed into a brief, summary format.

Data collection and analysis occurred concurrently. Following verbatim transcription, the transcripts were read and analysed to identify emerging codes, themes and categories (FM, SD).[[24–26]] To avoid potential investigator bias and to validate the findings, all transcripts were reviewed by a third researcher (CG). FM maintained a reflective diary, bracketing potential bias, and discussed the research process regularly with the senior researcher (SD). Ideally, recruitment continues until data saturation, but in this case maximum recruitment occurred at the beginning as the number of patients who had died was established. Inductive thematic saturation was also achieved where saturation is based on the number of new codes or themes emerging.[[27]]

Qualitative research studies investigate a specific issue or phenomenon in a certain group, of a focused locality in a particular context, and hence generalisability of qualitative research findings is usually not an expected attribute.[[28]] In line with that, it cannot be assumed that the findings of this study represented the experiences of all families in New Zealand. However, they may credibly reflect the experiences of many families, given the high participation rate of 22/26 families. Ethical approval was granted by the University of Otago Health Research Ethics Committee – H20/073. Participants were identified by P with sequential numbering; MP was used to indicate Māori whānau. Families and friends were referred to as whānau.

Results

Of the selected 26 deceased patients, two families declined participation and two families were unable to be contacted. Thus, a total of 22 next of kin were interviewed. The demographics for the deceased patients are summarised in Table 1. Two of the inpatient deaths occurred during COVID-19 Alert Level 3 and 20 deaths occurred during COVID Alert Level 4. Only one of the 22 patients was positive for COVID-19 (SARS-CoV-2 PCR).

Several themes emerged from the transcripts. Some of the experiences related to general nursing care rather than specific COVID-related care. Positive and negative experiences relating to the COVID-19 pandemic period are summarised in Table 2 and Table 3, respectively.

View Table 1 & Table 2.

Positive experiences included better access in the hospital environment as compared to residential care facilities, excellent clinical care and gratitude for receiving telephone calls from the research team. For many of the families, it was advantageous to be transferred from a residential care facility to the hospital at the end of life because of stricter RVPs in the residential care facility. The telephone call from the research team was perceived as an extension of bereavement care provided by the hospital.

View Table 3.

Negative experiences related to clinical care, the patient being alone at the time of death, poor communication from the treating team, delays in turn-around-time of COVID-19 test results and the door screening process for visitors. Limitation of access to visitation was a major theme identified in the study. Video visits by Zoom for whānau were used in ICU for the patient who died of COVID-19, but not offered for patients dying on the wards.

Although the CCDHB had a RVP, some families perceived that they got in “by sneaking in”, by accompanying the ambulance staff, being fortunate in having a particular doctor advocate for them or being on particular wards and by having younger nurses in attendance who were more relaxed about the rules. From the families’ descriptions, there did not appear to be a cohesive application of RVP between the different wards. Two participants (MP21 and P1) suggested making access at the front door easier by giving the family of a dying patient "a laminated red card so they wouldn’t be embarrassed (by being asked repeatedly); maybe separate table like when you go to the polling booth, for those people that are in the process of passing away”.

Table 4 summarises experiences described by Māori whānau. Themes included compliments regarding clinical care, being rushed to leave resulting in their relative being alone and issues specific to their cultural preferences, eg karakia, having staff familiar with tikanga and assistance from Whānau Care Services.

View Table 4.

Discussion

This COVID-19 lockdown research provided us with an opportunity to look at what recently bereaved people need. Our conversations show their needs were not much different to what people always need when their relative is dying in hospital.[[1–4]] The inconsistent practice regarding access to the hospital may have been due to the difficulty in filtering information down to staff as the RVP changed rapidly. The high response rate to our telephone calls and the gratitude expressed by participants demonstrated the value of hospital follow-up for bereaved whānau.

The hospital services usually offered to bereaved families were not offered to the families we spoke to. The Te Wai symbol usually placed on the door where a patient has died, and subsequently offered to families to take home, as well as the ward bereavement quilts normally used to cover the mortuary trolley, were all removed. The CCDHB Te Wai bereavement symbol is a reminder of the respect and solemnity that the death of a person requires in an acute service. The bereavement quilt, which is also part of the CCDHB Te Wai process, covering the metal mortuary trolley (previously described by families as a “meat van”) [[2]] adds dignity to the transfer of the patient’s body to the mortuary. These practices were suspended during Levels 3 & 4 due to the perceived risk of infection.

Whānau Care Services were offered to only one of the six Māori whānau. The Whānau Care team’s offer to support all families was communicated by way of the CCDHB intranet, but clinical staff seemed unaware of this offer. Experiences of Māori whānau in this study supports the importance of workforce initiatives that reflect the demographics and cultures of our community. As Moeke-Maxwell et al[[20]] have said “culture is a useful framework to understand peoples’ unique needs and is particularly relevant for those nearing death”. The significance of these practices was highlighted by the efforts of MP26’s niece (see Table 4) not to abandon her mother’s body at the funeral home, which is consistent with tikanga.[[19,20,21,29,30]] One of the important traditional Māori practices is the unbroken accompaniment of the dying person and the body. The RVP adversely affected these practices. Other tikanga practices including washing the body, use of water for blessing the room and recitation of karakia were offered to some but not all Māori whānau in this study. As in our study, Moeke-Maxwell et al[[20]] found that acts of kindness from health professionals helped to soften the experience of bereavement, as did the accompaniment of the dying by family or by a health professional, and being able to stay with the older person when they were dying.

Our findings, in a country where deaths during lockdown were mostly not COVID-related, mirror the findings in countries where COVID-19 deaths were common. The needs that emerged for family members in a similar Italian study[[31]] included the need for information, the need for reassurance, to be listened to and supported, to preserve a relationship with their loved ones, and the need to be supported in the grieving process. Lissoni et al[[31]] describe how telephone conversations from physicians at least once a day and at an agreed time kept families informed. Borghi et al[[8]] recommend telephone call follow-ups to families after the death, describing a telephone-based early psychological intervention by clinical psychologists to families of hospitalised patients who died with COVID-19, two or three days after the death and one week to two months later to prevent or treat complicated grief.

Exploring the importance of palliative care in the COVID-19 pandemic, Wynne et al[[6]] remind us that: “palliative care is a field defined by its ability to face some of the darkest and most frightening aspects of life and still preserves our hope and humanity.” In the COVID-19 pandemic, palliative care has received unprecedented levels of societal attention. Unfortunately, this has not been enough to prevent patients from dying alone or to enable relatives to say goodbye. Fadul[[32]] says that palliative care considerations needed to be incorporated into COVID-19 pandemic planning: one of which is bereavement support for family members who are likely to be isolated from patients at the moments of death.

Andrist[[33]] notes that RVP has been widely implemented as a means of decreasing the transmission of COVID-19: “This must not be the only good that quality healthcare must aim to achieve. Severely RVP undermines our ability to provide FCC particularly at end of life and during critical illness. The enforcement of these policies consequently increases the risk of moral distress and injury for providers”. Feder[[34]] surveyed bereaved families and concluded that communication between patients, families and healthcare teams at the end of life remains critically important during RVP. The importance of establishing final contact before the patient died was highlighted by Hanna et al.[[35]] Strategies include prioritising virtual connectedness and creating alternative opportunities for relatives to say goodbye. Wallace et al[[5]] state that: “we cannot underestimate the power of sitting alongside a loved one as they die, having a shared space to reflect on life and a relationship and a real chance to say goodbye”. Plunkett et al[[36]] describe the RVP as "draconian health service rules" placing an immediate and ongoing burden on clinicians and families alike, negatively impacting the quality of dying with the sole visitor at the bedside being without the comfort of a companion. They highlight the moral injury suffered by clinicians enforcing severe restrictions and conclude that one size does not fit all during a global crisis.

We recommend that specific plans related to care of patients dying from COVID-19 and non-COVID-19 illnesses, care of the deceased and care of their whānau throughout the process—including bereavement—be established and prioritised in hospital pandemic policy. Plans should include the provision of access cards for whānau of dying patients; daily telephone/Zoom communication with an update by the doctor for whānau; e-mailing of photos of doctors/nurses and the room to whānau; allowing two people rather than one at the bedside; establishing a bereavement whānau coordinator to keep in touch with whānau of dying patients; and follow-up telephone calls to whānau after the death. Tikanga around dying and death for Māori whānau must be known, understood and accommodated. During a pandemic, cutting back on support structures for the dying and bereaved will cause significant distress and harm. Reflecting on experiences of whānau will enable us to create wiser, more compassionate policies now for future pandemic situations.

Limitations of this study

Although New Zealand’s death rate from COVID-19 was low, we adopted hospital RVPs similar to many countries. For that reason, exploring families’ experiences in New Zealand provides valuable information.

We restricted our research to patients who died under General Medicine as the principal researcher is a General Medicine physician. In addition, General Medicine had the largest percentage of deaths. We recognise that the experience of families on other services may be different, for example oncology or surgical wards.

As this was collaborative research with the Whānau Care team, we identified in addition six Māori patients who died during that period. We did not purposefully seek out other cultural groups such as Pacifica peoples. We did this because, in response to the rapidly changing status of the pandemic, the Whānau Care team rapidly adapted its service delivery highlighting the importance of patient whānau centred care for all during and after death.

Summary

Abstract

Aim

A qualitative exploration of the experience of whānau whose relatives died in an acute hospital setting during Levels 3 & 4 of the 2020 COVID-19 pandemic in Aotearoa New Zealand.

Method

Next of kin for 22 patients who had died in Wellington Hospital during Levels 3 & 4 of the 2020 COVID-19 pandemic (16/22 under General Medicine with an additional 6/22 who identified as Māori) from a total of 70 hospital deaths were interviewed by phone in August 2020. Whānau were asked to describe their experience of a relative dying. Following transcription, thematic content analysis was undertaken by the researchers.

Results

Whānau provided poignant and heartbreaking accounts of their experiences. Researchers broadly categorised their feedback as positive or negative. The dominant factors that contributed to positive experiences for whānau were excellence in nursing and medical care. Māori whānau benefitted from hospital staff understanding the importance of tikanga Māori relating to dying and death practices, and incorporating these into the care of the patient. Factors that contributed to negative experiences for whānau included separation from loved ones at the time of death. The findings underscore the importance of whānau accompanying the dying patient, and non-abandonment. Other negative experiences were not having time to say goodbye, and insufficient communication with medical personnel. There were also misunderstandings and uncertainty about the changing hospital rules around isolation with great variability in interpretation by different staff.

Conclusion

Pandemic policies should prioritise the needs of whānau and hospitalised patients who are dying of any illness, including: daily telephone/Zoom updates by doctors and/or nurses with whānau; emailing photos to whānau of doctors/nurses/patient’s room; having a bereavement whānau coordinator keeping in touch with relatives of patients who are dying; making follow-up telephone calls to whānau after the death; prioritisation of fast COVID-19 testing if there is a possibility that the patient will die; ensuring availability of Māori healthcare staff to support Māori patients and whānau; and observation of Māori tikanga around dying and death for Māori and their whānau.

Author Information

Sinead Donnelly: Consultant physician, Wellington Hospital, Wellington. Fiona McDonald: House Surgeon, Hawkes Bay Hospital. Cheryl Goodyer: Manager Capability, Maori Development Group, Wellington Hospital.

Acknowledgements

Correspondence

Sinead Donnelly: Wellington Hospital, Private Bag 7902, Wellington, 6242

Correspondence Email

Sinead.donnelly@ccdhb.org.nz

Competing Interests

Nil

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