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Research

Support for home carers dealing with the drama of death

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Seeing the process of dying as a drama can help nurses to support family members caring for patients dying at home 

In this article…

  • The experiences and needs of family carers
  • The dramaturgical concept of carers as leading players in the drama of the dying process
  • How palliative care nurses can support family members caring for a dying patient;
  • The pros and cons of professional help and paid carers

Author

Jenny Newbury is community palliative care nurse specialist, Dorothy House Hospice Care, Winsley, Wiltshire.

Abstract

Newbury J (2011) Support for home carers dealing with the drama of death. Nursing Times; 107: early online publication.

Background Many terminally ill patients want to die at home. Family carers are fundamental to achieving this, but often feel anxious and unprepared for the role. Supporting these carers is a vital aspect of palliative care nursing.

Aim To explore the experiences of carers of patients dying at home, in particular their expectations and preparedness for the dying process.

Method The study followed a qualitative approach. In-depth, semi-structured interviews with 15 carers were carried out.

Results Carers experienced uncertainty and felt unrehearsed for their role. They were reluctant to seek information to give them a script for their performance because it was too painful to contemplate the patient’s death. The carers needed the direction of health and social care professionals, and help of paid carers, but experiences of these services varied.

Conclusion The study highlighted the drama of the situation for carers, and the anxiety of being the leading player on stage with minimal preparation. Nurses play a crucial role in supporting carers and can use this “dramaturgical” perspective to guide them in giving carers the direction they need.

Keywords: Family carer, Palliative care, Dying process, End of life

  • This article has been double-blind peer reviewed

 

5 Key points

  1. Many family carers have fears and anxieties about coping with the dying process at home
  2. They need information, preparation and guidance about the dying process
  3. Equipment, medication and paid care should be provided at the right time but with sensitivity and explanation
  4. Carers need approachable and accessible health and social care professionals to support them in being there and “letting go”
  5. Professionals and paid carers need training to prepare them for end of life conversations with carers

 

Supporting the family or other informal carers of terminally ill patients is a vital part of palliative care nursing (Marie Curie Palliative Care Institute, 2010). The aim of this study was to explore and understand carers’ experiences as lead performers in the drama of a family member dying at home. The article uses the term “carer” to include family members, relatives, friends and partners providing unpaid support to a patient dying at home.

Background

The UK End of Life Care strategy aims to enable more patients to live and die in their place of choice (Department of Health, 2008a). The majority of terminally ill patients spend most of their last year of life at home, and most say they want to die at home (Higginson and Sen-Gupta, 2000).

The role of carers is fundamental to achieving home death. As a community palliative care nurse specialist supporting the carers of patients receiving home palliative care, I am aware that many have fears and anxieties about coping with the dying process. My hospice runs a short course for carers, which includes preparation for the final stages of the patient’s life. The course is well evaluated, but not all carers can attend. Due to concerns that methods of preparing carers for the dying process at home were inadequate, I investigated their expectations and preparation, in particular for the last few days of the patient’s life (the dying phase).

Literature review

Carers providing home palliative care can experience emotional and psychological difficulties, financial strain, disruption to work, social dysfunction and relationship challenges. They also face challenges with patient care, household tasks, and communication with healthcare providers (Stajduhar et al, 2010), while caring can also have a negative impact on carers’ physical health. However, carers also report positive and beneficial aspects of providing end-of-life care (Hudson, 2004), describing a sense of accomplishment and satisfaction (Perreault et al, 2004). They also report personal growth, describing caring as a life-enriching experience and an opportunity to forge closer relationships with the patient (Hudson, 2004; Stajduhar, 2003).

Caring for a dying family member is a time-limited activity associated with progressive loss (Rhodes and Shaw, 1999). Carers put their life on hold, knowing it is temporary because the patient will die (Harding and Higginson, 2001). They often face a dilemma of not wanting to lose the patient, but not wanting their loved one to suffer any longer (Harding et al, 2003). They are in the unique position of both providing and needing support (Payne, 2010), and have the dual task of attending to their family member’s needs while preparing themselves for that person’s death (Steinhauser et al, 2001).

Carers’ lack of preparation, knowledge and ability can be exacerbated if they have no previous experience of dying or care-giving, or do not receive enough guidance from professionals (Funk et al, 2010). Clayton et al (2005) found that although patients and carers are often afraid to discuss the process of dying, they are relieved when the subject is raised. There is a potential connection between carers’ lack of preparation and their reports of fear, anxiety, stress and feelings of inadequacy and uncertainty (Funk et al, 2010).

Method

The study followed a qualitative approach using grounded theory methodology. The focus was on carers’ expectations and preparation for the last few days of their family members’ lives. I used a longitudinal design to capture carers’ perspectives, carrying out in-depth, semi-structured interviews with 15 carers in the weeks before the dying phase (current carers) and again three months after the death (bereaved carers).

The sample was from a specialist palliative care service in south-west England. Eleven carers were the patient’s spouse or partner, while four were adult offspring; five were employed full-time and two part-time, five had suspended work for caring, two were retired and one did part-time voluntary work. Thirteen patients had cancer, one had motor neurone disease and one had renal failure; 10 were male and five female, and all were white, aged 27-87 years.

The study was approved by the Local Research Ethics Committee (LREC) and the university Research Ethics Approval Panel.

Findings and discussion

Through concepts and themes identified from the interviews it became clear that carers were playing a leading role in the drama of the dying process. This “dramaturgical” perspective, influenced by the work of Goffman (1959) and Hare and Blomberg (1988), provided the study’s theoretical framework.

The scene at the time of dying has been described as a stage (Donnelly et al, 2006), and this theatrical concept underpins the presentation of the findings. Fig 1 outlines the dramaturgical concept of carers’ experiences, which is illustrated with quotes from carers’ interviews; pseudonyms have been used to protect confidentiality. 

Carers’ “performance”

Carers took on a role they did not want because they wanted their family member to be well, and some alluded to their role as a performance:

  • Margareta (bereaved carer): “I found it extremely difficult to act as if everything was okay, because it wasn’t.”
  • Nicola (current): “You’ve got to be strong. Strong is the best thing. Don’t be weak. Try not to cry and just try and laugh. On the telephone you’ve got to try not to crack up because they can tell it in your voice.”

Researchers have identified “pretending” as a coping strategy for carers. Yates and Stetz (1999) found carers acknowledged their relative was dying, but chose to act as though they would continue to live. Carers also feared they would miss their cues:

  • Jane (bereaved): “I was worried to death that I’d, that am I going to know the signs, that am I going to miss him [dying]?”

Setting and props

Most carers saw home as the right place for their family member to die, but all found caring mentally and physically tiring. Some found aids and equipment, such as a hospital bed, helpful, but these also changed the setting:

  • Margareta (bereaved): “He had his own bed in his own room because it was a special bed that sang and danced and did everything. I did like that actually - he was put in bed and slept a bit because I had to sleep a bit.”

Dying at home is often viewed as synonymous with dying in your own bed. One carer felt under pressure from professionals to have a hospital bed:

  • Stephen (current):It wasn’t Sarah’s wish I knew, but at one stage I felt it was being imposed on us… to be put downstairs in a hospital bed was not what she considered to be hospice at home. Hospice at home was to be as close to me as she could at night, which actually made it easier for me and still does.”

Stephen resisted the pressure and his partner died next to him in their shared bed.

  • Stephen(bereaved): “At 12 o’clock I made her comfortable. She was gurgling a bit so I put her on her side and I sort of said to her: ‘Well you can go now but I somehow think you’ve got several more days of this’. I woke up in the night, I don’t know what time, and thought I couldn’t hear her breathing. Then I heard her breathe … And then I woke up at seven o’clock and she was too cold and I’d been right up beside her. It just felt nice.”

Equipment should be introduced sensitively as it can change the home environment and interfere with family life, relationships and intimacy (Dawson and Kristjanson, 2003). Carers valued anticipatory provision of equipment and medication, but it increased anxiety if its use was not fully explained:

  • Nicola(current): “I’m just worried that I won’t know. The doctors say you’ll know when you’re at your last stages. I’m just worried because I’ve got this bag of medicines in my cupboard on standby… and I’m thinking is this the time when the medicines should be out?… What am I looking for? And they don’t tell you any more. They just say you’ll know.”

Rehearsal

Most carers felt unrehearsed for their role, and all experienced uncertainty about the dying phase:

  • Sue (current):Obviously I know what the end result’s going to be, but I don’t know what the end stage is going to be.”

Carers often talked about not knowing what to expect and what signs to look for, and expressed concern about what help was available and from who, when to ask for it, and what is expected of them as carers:

  • Jane (current):I don’t really know what I’m looking for. I don’t know what’s going to happen… you don’t know where you’re going…You just don’t know whether you should be doing this, that, the other, just working blindly.”

The carers had minimal or no previous experience. Copp (1999) and Payne (2010) argue carers have little means of becoming acquainted with dying because the reality of death and dying is rarely discussed, although there was no evidence that a general awareness of dying would have helped them. 

Script

Written information on caring for the dying is available, yet few carers had accessed any. As other studies have found, they were ambivalent, or reluctant, to seek information about what to expect (Harding and Higginson, 2001). One had bought a book but could not read it because it meant admitting what was going to happen. Ambivalence can make it difficult for nurses to alleviate carers’ anxiety and prepare them for the dying phase. However, carers did value being given information and guidance directly rather than being signposted to books or websites.

  • Naomi(current): “Diane [community palliative care nurse] gave us a couple of leaflets… the ones on coping with dying were hard to read. It’s difficult to accept what it is saying… but I would rather know so at least it is not unexpected.”

Directors

Carers wanted professionals to be the directors of their performance. Bereaved carers said they needed professionals to anticipate each stage of the dying process, and prepare them. They wanted professionals to be approachable, accessible and available, but the quality of professional support varied considerably (Box 1).

Box 1. Carers’ views of professional help

Positive

  • Overall monitoring role
  • Accessibility
  • Acting as a go-between with surgeries and hospitals
  • Sorting out medication issues
  • Recognising carer stress
  • Anticipating needs
  • Inspiring confidence
  • Advocating on behalf of patient and carer
  • Sources of information
  • Role models

Negative

  • Delayed or absent response, especially out-of-hours
  • Overbearing, officious or insensitive manner
  • Lack of interest
  • Inconsistent advice

Supporting cast

Most carers needed a supporting cast, with other family members contributing to the patient’s emotional and physical care. The supporting cast also included paid domiciliary care, carers’ experience of which varied widely (Box 2). 

Box 2. Experiences with paid carers

Positive

  • Regular, familiar carers
  • Flexible approach to tasks
  • Source of guidance
  • Relief for carer, especially at night

Negative

  • Lack of continuity – different carers
  • Inexperienced carers
  • Erratic timing and missed visits
  • Being hurried and cutting corners
  • Rough treatment of patient
  • No care plan or briefing of carers
  • Poor management
  • Sharon (current): “I’ve just changed agencies… I find the whole care thing totally traumatic, very stressful… they were just, they weren’t giving him very much time. The quality of what they were doing was very poor… the company was a total shambles.”
  • Brian (bereaved): “She got to know every one of them. At seven o’clock in the morning, in they would come: ‘Laura, I’m here’. And they’d take her and wash her and get her to the toilet… the carers were brilliant… and they all came to her funeral.”

Professionals recognise when carers need a supporting cast, but paid carers must be introduced with sensitivity to individual preferences and privacy (Newbury, 2009). Community nurses can contribute to monitoring standards, and educating and supporting paid carers.

Audience

Carers were frequently aware of having an audience:

  • Paula (bereaved): “I was holding his hand. The district nurse was there and Dr Morris had turned up. There was a carer there so he had a bit of an audience… I think I would have liked to have been on my own with him… I was a bit conscious of having an audience.”

Professionals praising their performance confirms carers’ coping abilities and affirms the positive aspects of caring.

  • Stephen (current): “Several people in [hospice] have actually told the family that I’m doing a good job. Well at least I don’t have to blow my own trumpet.”
  • Jim (bereaved): “They’re all saying I did marvellous.”

Final act

The final act of the drama is the death itself. Being there was a large part of the carer’s role throughout the dying process, but it took on special significance at the moment of death. Being at the bedside was not as difficult as some had anticipated:

  • Paula (bereaved): “I thought it was quite nice because I’d never seen anyone die… It’s nothing to be frightened of.”

Being there was also symbolic of “letting go”. The concept of letting go of a loved one is characterised by a move towards acceptance of impending death, and the realisation that its natural progression should not be impeded (Lowey, 2008). A family member experiences an internal turning point in which change is recognised as inevitable, and in the dying person’s best interests: 

  • Naomi (bereaved): “I was just praying and saying: ‘look, you’ve done ever so well and I’m really proud of you, and I love you very much and you can go home to Jesus now.’ Not that anything I could have said or done would have stopped it, but it was almost like releasing him for me. It was really hard. But he couldn’t have gone on like that…he was so weak.”

Nurses who have built up a level of trust with carers can guide them in the process of letting go by allowing them to talk about what it means for them, and how to achieve it. This requires excellent communication skills, but some nurses feel inadequately prepared for these conversations (Ford, 2010).

After the death and removal of the body, the curtain closes on the drama. Carers enter a new era with different challenges and uncertainties:

  • David (bereaved): “Coping with John’s demise was a doddle compared to coping afterwards. I’d have him back with all that hassle again if I could.”

Conclusion

Specialist palliative care services and end-of-life care initiatives emphasise the importance of supporting dying patients’ family and carers. However, providing appropriate and effective support requires some understanding of carers’ experiences. This study has highlighted the drama of the situation for carers, and the anxiety of being the leading player on stage with minimal preparation for the scenes ahead. Nurses play a crucial role in supporting carers and can use this dramaturgical perspective to guide them in giving carers the direction they need to perform their role.

All participants were white, most patients had cancer, and all were receiving specialist palliative care. Studies involving a wider clinical, ethnic and cultural mix are needed to highlight perceptions, customs, expectations and needs across the whole population.

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