Participant characteristics
Among the BeCovid baseline participants (n = 711), 156 had experienced a cancer bereavement (21.9%; n = 156/711) and were included in this secondary analysis (N = 156/711 21.9%). Most of these cancer-bereaved survey respondents were women (n = 129, 82.7%) and did not identify as belonging to a minority ethnic group (n = 149, 95.5%). The mean age of these survey participants was 50 and most had lost either a parent (n = 67, 42.9%) or a partner (n = 51, 32.6%). Out of the 10 interview participants (who had also participated in the survey), 8 were female, 2 belonged to a minority ethnic group, 5 had experienced the death of a partner. Their mean age was 54. Home was the most frequent place of death reported in the surveys (n = 80, 51.3%), followed by hospital (n = 37, 23.7%). In the interview cohort, there was a higher proportion of deaths in hospices (60%; n = 6/10) as compared with the survey cohort (19.9%; n = 31/156). About half of participants considered that their relative was ‘expected’ to die around the time that they died (survey participants: 47%; n = 74/156; interview participants: 50%; n = 5/10) (Tables 1 and 2)
Table 1
Characteristics of the bereaved study participants (separately for survey and interview participants).
| survey participants (n = 156) | interview participants (n = 10) |
Age (years) |
| Mean [Median] | 50.2 [51] | 54.4 [56.5] |
| SD | 12.2 | 8.7 |
| Min-Max | 22–90 | 39–68 |
| n | % | n | % |
Gender |
Female | 129 | 82.7% | 8 | 80% |
Male | 25 | 16.0% | 2 | 20% |
Non-binary | 1 | 0.6% | - | - |
Prefer not to say | 1 | 0.6% | - | - |
Ethnicity |
From a minority ethnic background | 7 | 4.5% | 2 | 20% |
Not from a minority ethnic background | 149 | 95.5% | 8 | 80% |
Highest qualification |
None or GCSEs* | 14 | 9.0% | 1 | 10% |
A-level or Apprenticeship or ONC** | 27 | 17.3% | - | - |
HND or University Degree*** | 115 | 73.7% | 9 | 90% |
Sexuality |
Heterosexual/straight | 125 | 80.1% | 6 | 60% |
LGBTQ+ | 13 | 8.3% | 2 | 20% |
Unanswered | 18 | 11.5% | 2 | 20% |
*GCSE = General Certificate of Secondary Education for 15 and 16 year olds in the UK |
** A Levels = Advanced Level subject-based qualification for students in the UK aged 16 and above; ONC = Ordinary National Certificate (equivalent to A Levels) |
*** HND = Higher National Diploma (vocational qualification provided by higher or further education colleges in the UK) |
Table 2
Characteristics of the person who died for both survey and interview participants.
| survey participants (n = 156) | interview participants (n = 10) |
Age (years) |
| Mean [Median] | 69.1 [70.0] | 61.4 [58.0] |
| SD | 13.1 | 17.7 |
| Min-Max | 23–97 | 38–96 |
| n | % | n | % |
Age (grouped) |
< 20 | 1 | 0.6% | N/A | N/A |
20–39 | 4 | 2.6% | 1 | 10.0% |
40–59 | 32 | 20.5% | 5 | 50.0% |
60–79 | 87 | 55.8% | 2 | 20.0% |
≥ 80 | 32 | 20.5% | 2 | 20.0% |
Relationship to the bereaved person |
Child | 2 | 1.3% | 1 | 10.0% |
Sibling | 7 | 4.5% | 2 | 20.0% |
Parent | 67 | 42.9% | 2 | 20.0% |
Grandparent | 9 | 5.8% | N/A | N/A |
Other family | 12 | 7.7% | N/A | N/A |
Partner | 51 | 32.6% | 5 | 50.0% |
Friend/colleague | 8 | 5.1% | N/A | N/A |
Place of death |
Care home | 6 | 3.8% | N/A | N/A |
Hospice | 31 | 19.9% | 6 | 60.0% |
Hospital | 37 | 23.7% | 1 | 10.0% |
Their home | 80 | 51.3% | 3 | 30.0% |
Other or no response | 2 | 1.3% | N/A | N/A |
Death expected? | | | | |
Yes | 74 | 47.4% | 5 | 50.0% |
No | 69 | 44.2% | 5 | 50.0% |
Don’t know | 12 | 7.7% | N/A | N/A |
No response | 1 | 0.6% | N/A | N/A |
Key themes
Four main themes and nine sub-themes were identified relating to the EoL period. The main themes were: 1. The impact of COVID-19 measures on contact with the person who died; 2. Support for family members during the EoL period; 3. Communication with health and social care professionals; 4. Prioritisation of COVID-19 and the impact on patient care (Table 3).
Table 3
Overview of qualitative themes.
Main themes | Sub-themes |
---|
The impact of COVID on contact with the person who died | • Restricted contact and communication challenges • (Non)adherence to guidelines |
Support for family members during the end of life period | • Informal support networks, isolation, and loneliness • Variable provision of formal support for caregivers |
Communication with health and social care professionals | • Lack of communication • Variable communication quality |
Prioritisation of COVID-19 and the impact on patient care | • Challenges accessing care and de-prioritisation of cancer services • Inconsistent quality of patient care |
The impact of Covid-19 measures on contact with the person who died
A primary source of distress for almost all participants was the impact of COVID-19 restrictions on spending time with their dying relative during the last days or weeks of life.
Restricted contact and communication challenges
During the 2020 ‘lockdowns’, care facilities implemented infection control measures which prevented relatives/friends from spending extended time with patients at the EoL. Participants feared they had let down their dying relatives, and felt guilty for leaving them alone for prolonged periods in unfamiliar, vulnerable environments. Visiting restrictions were particularly distressing when they resulted in someone dying alone, especially in hospitals.
I'm haunted by the fact mum was on her own and must have been terrified. She was the matriarch of our family and did everything for us and feel we let her down. I can't move past this. Bereaved daughter, whose mother died in hospital, survey PID 364
Even for those able to visit, the frequency and/or number of visitors was heavily restricted. Choosing which family members could visit was perceived as a great injustice, with some families “drawings straws” (PID567) to reduce potential tension.
…the door to her room was kept shut and nobody came in. I was alone with her when she died as they would only allow one visitor. I have never felt so alone and vulnerable. Bereaved sibling, whose sister died in a hospice, survey PID 633
COVID-19 measures also prevented visiting people at home. Many participants described the impersonal and inadequate nature of ‘visiting’ through a window or sitting two metres apart in gardens. Lack of physical closeness was highly upsetting, with people feeling unable to comfort their relative during their illness and final days of life.
Basically, the restrictions ruined the last months of his life. He needed moral support, love and companionship, which he was unable to get... I couldn’t say goodbye to or hug my own father. I’m finding that very difficult to accept. Bereaved daughter whose father died in a care home, survey PID 304
People reported variable communication with their dying relatives, something which was particularly important during hospital or hospice stays where visiting was restricted. Communication challenges included reliance on staff members’ assistance (associated with infrequent, short phone calls) or patients’ difficulties speaking e.g. due to tumour progression or declined health state.
With him not being able to text or use his phone our contact with him was limited to the portable ward phone but as we couldn’t see if he was asleep or anything we often only spoke to him for a few precious minutes. Bereaved wife whose husband died at home, survey PID 104
(Non)adherence to guidelines
Enhanced shielding guidelines for ‘vulnerable people’ (e.g. cancer patients) to isolate at home, were recommended before whole population restrictions. However, for most people, the wish to spend time together was considered more important than full adherence to regulations. The inevitability of death and the desire to maximise time spent together mostly overrode fear of infection or a moral imperative to follow rules.
I wasn’t able to see my dad for 4.5 months. As soon as I found out he was terminal I visited him and stayed with him as I wasn’t prepared to not see him and provide care and support, regardless of covid. Bereaved daughter whose father died at home, survey PID 413
Strict guideline adherence was, however, described by a minority of participants. Those who followed shielding and distancing advice very closely described being unaware that their relative’s cancer was terminal or, if they were acting as their relative’s primary carer, being anxious about what would happen if they themselves became unwell. These participants often expressed regret and frustration about this time spent in isolation from one another, while some also lamented the loss of quality of life for the person who died.
So we went into coping with all that and managing live in the house on our own and what we decided was, I was going to completely shield with her, although it would have to be in separate rooms and all that sort of stuff, in our own protected bubble. Bereaved partner whose spouse died at home, interview, PID 484
One interview participant, a healthcare professional, also described her niggling doubts and regrets over whether she might have noticed that her father was sick much sooner had she not stayed away to protect him.
Just the weeks leading up to him being poorly that I've missed, if I’d known at the height of Covid that my dad was going to start to show signs of cancer, would I have stayed away or would I have I don’t know, put gloves and pinnies on and just gone to see him every day? I think the last weeks now I’d love to have back but I can't [crying]. Bereaved daughter whose father died at home, interview, PID 510
Lack of clarity and frequent changes to guidelines lead to confusion and frequent, frustrating miscommunications from healthcare providers. People were grateful when health and social care professionals made exceptions to visiting restrictions, allowing more time with the patient. This was not uncommon, especially in the final days/hours of life.
In general the hospital staff did everything possible in difficult circumstances. They lifted a no visitor policy to allow me to stay for the last four days of her life. Our three children were also allowed to visit the day before she died. Bereaved partner whose spouse died in hospital, survey, PID 486
Support for family members during the end of life period
Participants reported that accessing informal and formal support in the weeks leading up to and immediately following the death was especially challenging.
Informal support networks, isolation, and loneliness
COVID-19 measures significantly impacted participants’ ability to receive emotional and practical support from family and friends. This was particularly challenging for those whose family did not live nearby, or who lived alone, thus relying on phone calls and messaging.
I live on my own, work from home and don’t really have a support bubble as everyone is with others. It is very lonely and often feel abandoned, even though I acknowledge no one is at fault. I am dreading Christmas as this was always our time and this year, I will have no one. Bereaved daughter whose father died in hospital, survey, PID 516
Cessation of regular activities and gatherings contributed to the inability to escape from the situation, described by one participant like “being in a capsule”(PID598). Lack of physical comfort was especially hard to cope with and contributed strongly to the feelings of isolation and loneliness that characterised the EoL period for many.
Zoom does not replace coming together to mourn. I still have not been able to give my Dad a hug and it was his Dad who died, due to social distancing. Bereavement under social distancing is just awful, understandable but awful. Bereaved granddaughter whose grandfather died at home, survey PID 41
Yeah, I think in hindsight I think it was almost like erm, at that time the world shrunk, it was like being in a capsule…Erm, so that was sort of more or less erm halted. You couldn’t even go out to the, I mean I've just been swimming this morning which, you know, I used to do quite a bit, I started going to the leisure centre, you couldn't do that cos they were closed. You couldn’t go to the shops, just to give you a distraction. Bereaved daughter whose mother died in a hospice, interview, PID 598
Despite the challenging circumstances, many people felt well supported by their social networks, thanks to the internet and other communication technology, and appreciated talking and sharing experiences over video call or messages. One bereaved partner valued the enhanced time that she and her partner had together at the end due to the restrictions on in-person socialisation and activities.
…and I have a very, um a one supportive group of friends. So, um, I was absolutely never short of emotional support, whether that was on the phone or on social media…Bereaved partner whose wife died in hospital, interview, PID 473
At the same time Covid restrictions have helped. [Partner] asked that they 'Stop all the clocks' and this to a certain extent happened. There was no pressure to go out and socialise. The fact that everyone had to stop seemed somehow appropriate…Bereaved woman whose partner died at home, survey, PID 484
Variable provision of formal support for caregivers
Formal support for caregivers, as provided by a care setting, HSCP or other organised support, centred around optimising care provision, managing expectations and preparing for death.
Specialist, third-sector cancer services were often considered the most helpful support providers, in terms of both clinical and emotional support (e.g. cancer charity nurses providing home care). With support groups and in-person counselling suspended, telephone support was appreciated and provided helpful preparation for what was to come. Experiences of accessing formal support varied, and reflected the different needs expressed by participants. Those with close, supportive families sometimes declined formal emotional support, while others describe “fight[ing] for support” (PID274) as no information was provided.
But I could’ve accessed them had I wished to, easily. Erm, I think I come from a generation where we don’t, I've done so much talking to counsellors and all that kinda thing I don’t know whether's a good thing or a bad thing…I had the support of my partner who lives with me, she and I talked quite a bit and a lot of friends wrote things which were helpful. Bereaved mother whose son died at home, interview PID 527
Home care nursing and palliative care staff were considered supportive when they demonstrated concerted efforts to provide personalised care, and actively responded to the concerns, questions or needs of family members. Conversely, reduced interaction left participants feeling under-supported and underprepared in their caregiving roles, making the EoL period and death more traumatic. A desire for better preparation for supporting dying family members was emphasised in the interviews.
For the week he was home before he died, we felt extremely supported by the daily visits (and more when we needed them) of the district nurses and the support of the palliative care team. Bereaved daughter whose father died at home, survey PID 618
…I couldn’t believe how hard it was to find advice how to deal, um, with somebody with a terminal illness…. And I googled what do you talk … how do you talk to somebody who’s terminally ill… you know, I can’t believe (cancer charity) don’t do more on this, there was a phrase I read which said what you can do is go to the person and say do you want to talk about how you’re feeling at the moment. Bereaved wife whose husband died in a hospice, interview PID 310
Communication with health and social care professionals
Maintaining effective and sensitive communication with family members about the patient’s condition and care is another important aspect of caregiver and family support at the end of life. Difficult communication with healthcare professionals regarding patients was a significant shortcoming of pandemic care, which led to frustration and distress due to uncertainty about the health of their relative. The quality of communications also contributed to how prepared people felt for the death, with significant variation across care-settings.
Lack of communication and information regarding patients
Challenges in accessing information were almost universal in hospitals, where many participants described repeatedly contacting wards for information or updates. This was frustrating as participants felt that regular updates about their relative’s care and condition should be a core component of care, especially with visiting restrictions in place.
I had to chase for updates all the time. No fewer than ten people promised updates and to get back to me but I received not one call-back. Not being able to be there on the ground was appalling and traumatic. Bereaved husband whose wife died in a hospice, survey, PID 391
Participants frequently received unclear, insufficient, conflicting, or incorrect information, a problem which was compounded by clinical staff being too busy to be contacted. People also described inefficient communication between healthcare teams, becoming frustrated and upset when left to relay information between professionals themselves.
… two days after dad was transferred to the home and two days before he died (he was only there for four days), his GP rang me demanding to know why his medication had changed at what was wrong with him. I was quite short with her (surely she could have got this information from the hospital or the home without bothering a family member at such a difficult time). Bereaved son whose father died in a care home, survey, PID 418
Variable communication quality
Dissatisfaction with communication also related to the quality of interactions. Participants felt dismissed when their concerns were not taken seriously (e.g. not investigating new symptoms) or questions not answered clearly, and sometimes perceived a lack of sensitivity when discussing highly emotional issues. Unmet promises, a perceived lack of transparency and feeling hurried contributed to a perceived lack of compassion. Positive communication experiences included being kept well informed, with staff available to address questions and concerns. Open and approachable staff who kept families well informed, took time to listen, and responded with understanding were greatly appreciated. These experiences and qualities were attributed most often to community-based hospice and nursing staff. Experiences with general practitioners were mixed, reflecting both positive and negative experiences.
The face to face communications with hospice staff were enormously helpful and comforting. I never felt they were rushing me and they always made sure they answered my questions. The booklet 'When Someone Dies' was immensely useful. It provided lots of practical and emotional help, including about things I wouldn't otherwise have thought of. Bereaved son whose mother died in a hospice, survey, PID 597
Our GP came out & arranged a community palliative nurse who was marvellous, she organised carers & was an enormous support in his last 12 days. So communication was vastly different - from the hospital/oncologist/ specialist nurse being uncommunicative, to the community palliative nurse, GP, district nurses & carers who were absolutely brilliant. We could ring them or they’d ring us. Bereaved wife whose husband died at home, survey, PID 104
Telephone communication was generally adequate for short updates, however face-to-face communication was preferred for appointments or detailed conversations. Email updates and hospital letters were largely considered unhelpful; information leaflets and booklets were more positively received. Taking information home to read helped people understand complex information about treatment, illness and EoL which would have been overwhelming to receive verbally.
We also were given a little book by the [terminal illness support charity] foundation that gave lots of specific details and answered a lot of questions. I found the book very helpful because the subject was very distressing and the book enabled me to just take in small amounts of information as and when I could cope with it, and to re-read things that I needed to clarify. I find that when I’m upset, it’s often difficult for me to listen and understand fully so the book meant that I could go at my own pace. It also answered some questions that I felt unable to ask the nurses as it was too upsetting. Bereaved daughter whose mother died at home, survey PID 369
Prioritisation of COVID-19 and the impact on patient-care
Many participants felt that the death of their relative was an unjust consequence of COVID-19. People expressed concerns that non-COVID patients were neglected, as many services were suspended to reduce COVID-19 transmission. Experiences of care during the pandemic, across all care settings, were compared unfavourably with pre-pandemic hopes or expectations of quality EoL care.
Challenges accessing care and de-prioritisation of cancer services
Participants reported that accessing the right care and support services was challenging, with some people feeling pushed away due to perceived COVID-19 risk or healthcare professionals not taking relatives’ concerns seriously. Interviews highlighted the view that reduced face-to-face interaction led to patients silently reaching crisis point as new symptoms and deterioration were missed, especially when attempting to access GP care. Healthcare professionals sometimes incorrectly attributed symptoms to COVID-19 infection, which hindered access to necessary care, caused significant upset and contributed to feelings of helplessness.
… nobody would look at him, no healthcare professional would let him anywhere near them, they said, you know, .… you can’t come to any of the hospitals, you’ve got COVID. And it went on for weeks. Bereaved wife whose husband died in a hospice, Interview PID 310
Fear of COVID-19 was felt to dominate the NHS, with people feeling that cancer services were detrimentally neglected. Suspension of normal services, redistribution of staff and challenges accessing care all contributed to the most significant and widespread cause of anger and distress among survey participants: feeling that COVID was prioritized over cancer.
I felt like I was having this battle with medics who … and medical people, and I think more people have died because of some false, false attempt to protect other patients, other patients …Bereaved wife whose husband died in a hospice, interview PID 310
Covid is terrible but all normal health care was suspended for months by both the hospitals and the GPs. This meant my family suffered greatly. This must not be repeated…Bereaved niece whose aunt died at home, survey PID 118
Many participants wondered whether their relative would have survived under normal circumstances. In the case of new diagnoses, regrets arose around earlier detection, timely help-seeking, face-to-face appointments, and screening. Among patients with known cancer, delays or cancellation of scans, appointments, and/or treatment were common. For many, these delays and cancellations were perceived to be fatal.
I will never stop wondering whether she might have survived the cancer which took her had Covid not drained the life out of the NHS for all but desperate Covid patients whose lives also hung in the balance. Bereaved woman whose friend died in a hospice, survey PID 150
We were having to deal with [NAME]’s cancer and the fact that as far as I’m concerned they took her off treatment and she would have lived longer, and she would have been more comfortable. The fact that she died in discomfort that was unnecessary in this world just, I mean I’m not going to go into what’s happening globally, but that was really traumatic. Bereaved wife whose wife died at home, survey PID 484
Inconsistent quality of patient care
Patient care experiences were variable, with some participants expressing significant disappointment with the quality of care provided to their relatives, while others were grateful and satisfied. District and palliative care nurses were frequently praised for providing high-quality care to patients despite COVID-19 restrictions. Participants were grateful for nurse and/or GP visits, appreciating and often choosing home care over hospital admission. Many who were unable to access GP or home care felt neglected and abandoned by the care system. Hospital care ranged from “outstanding” (PID561; PID662) to “poor” (PID575; PID600); negative patient experiences associated with the latter included unnecessary procedures, medication errors and insensitive communication with the patient which was distressing to both patient and family members. Participants sometimes also related these mistakes or shortcomings to their enforced absence and inability to be involved in important care-conversations and consultations, reflecting on the sense of powerlessness and loss of control that they experienced.
They took her in in a wheelchair and then they phoned me to say she was ready to pick up and I went to pick her up and they were outside with the wheelchair, she was there with a bag of drugs and I knew nothing about what had gone on inside and she couldn’t tell me. Bereaved wife whose wife died at home, interview, PID 484
But the memory of him finding out he had terminal cancer whilst he was alone and in pain and then not being able to visit will stay with us forever, as will (what felt like) the lack of compassion demonstrated by his GP when we called to ask for pain relief. The private care providers that adult social care engaged were fantastic throughout, as were adult social care, and many of the community nurses who visited. Bereaved granddaughter whose grandfather died at home, survey, PID 274
Inappropriate pain control was a frequent complaint common to hospitals and home care. A perceived lack of pain relief led to ‘traumatic’ thoughts of final hours spent in distress, while too much was reportedly associated with heavy sedation and inability to communicate.
In her last few days she was unable to speak, as she had so much pain relief, I wonder if it was too much as she lost her speech…. The hardest part was not being able to see her and my family in the weeks leading up to this, and my last chance of seeing her was on her death bed, where she was in a lot of pain. Bereaved granddaughter whose grandmother died at home, survey, PID 678
Perceptions of healthcare professionals also varied. Poor care attitudes were most commonly attributed to hospital staff, with participants finding them “too busy” (PID616) to provide individualised care for the patient. However, people were usually understanding, blaming systemic pandemic-associated pressures rather than individuals.