Chapter 10: Care of the Family / Carer, Colleagues and Self

Introduction

It is important for nurses working in palliative care settings to recognise that loss, suffering, grief and bereavement are normal, universal experiences in response to a person's death. Nurses will observe these issues in the patients for whom they care, in their families / carers / significant others, in their colleagues and in themselves. In this chapter, you will learn how to effectively manage loss, suffering, grief and bereavement in patients' families / carers / significant others, in your colleagues, and in yourself - and, in doing so, how to promote emotional wellbeing among those in the palliative care context.

Learning objectives for this chapter

By the end of this chapter, we would like you:

-To define the concepts of loss, suffering, grief and bereavement.

-To explain the factors impacting the experience of loss, suffering, grief and bereavement.

-To list the stages of grief through which a person may transition.

-To identify normal and healthy, versus complicated and pathological, grief.

-To explain grief and bereavement support strategies and resources appropriate for use when working with families / carers / significant others in palliative care settings.

-To explain grief and bereavement support strategies and resources which may be used to support nurses and other health professionals in palliative care settings.

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Loss, suffering, grief and bereavement

Loss, suffering, grief and bereavement are commonly encountered by nurses working in the palliative care setting. As described in the introduction to this chapter, nurses will observe these issues in the patients for whom they care, in their families / carers / significant others, in their colleagues and in themselves. It is important that palliative care nurses understand these concepts in detail; consider the following definitions:

  • Loss is the condition of being deprived of something. In palliative care settings, people may experience actual and / or potential losses related to health, function, roles, relationships and, eventually, life.
  • Suffering is the experience of pain, distress or hardship. It may impact negatively on a person's body, mind and / or spirit, and it may be acute or chronic in nature.
  • Grief is deep mental anguish that may arise from loss. As with suffering, grief may impact negatively on a person's body, mind and / or spirit. Consider the information in the following table:

Physical Responses to Grief

Psychological Responses to Grief

Spiritual / Sociocultural Responses to Grief

  • Crying.
  • Cognitive issues (e.g. difficulties making decisions).
  • Insomnia.
  • Loss of appetite, weight loss.
  • Fatigue.
  • Shortness of breath, heart palpitations.
  • Greater susceptibility to illness.
  • Nervousness, restlessness.
  • Depression, anxiety.
  • Guilt, self-reproach.
  • Anger, hostility.
  • Low self-esteem.
  • Feelings of helplessness and hopelessness.
  • Sense of unreality.
  • Interpersonal / relationship problems.
  • Ambivalence about the death. 
  • Spiritual pain, suffering, loneliness.
  • Fear of a higher power, the unknown and / or the future.
  • Feelings of unfairness, anger.
  • Loss of transcendence.
  • Search for meaning.
  • Need for love, hope.
  • Beliefs related to afterlife.
  • Death-related rituals.

A person's experience of grief is impacted by factors such as:

  • The perceived significance of the loss.
  • The person's relationship with and attachment to the person who has died.
  • The person's individual coping strategies and behaviours.
  • The person's level of age and maturity.
  • The person's previous experience with death and loss.
  • Circumstances related to the death - including location, reason, preparedness, etc.
  • Whether the death was sudden or anticipated.
  • Additional stresses or crises associated with the death.
  • The person's level of support.
  • The person's religious and sociocultural backgrounds.
  • The physical health of the person.

As described above, grief is deep mental anguish that may arise from loss. However, grief may also occur in response to anticipated loss (i.e. the impending death of a loved one). In this case, the experience of grief is referred to as anticipatory grief.

  • Bereavement is a strong emotional response to being left desolate or alone after having suffered a loss (particularly a death). It is a major life event, through which a person must be supported if they are to cope effectively.

Bereavement involves 'letting go' of the person who has died. This includes four distinct processes: (1) a shift in the person's thinking in relation to the deceased patient, (2) recognition of the fact that the patient has died, (3) acknowledging the physical and emotional loss that has occurred, and (4) engaging in a healthy grieving process. It is important for nurses working in palliative care settings to support people to realise that 'letting go' does not mean 'forgetting' the person who has died; rather, it means 'accepting' this fact, and continuing to live a meaningful and fulfilling life.

It is important for nurses working in palliative care settings to realise that bereavement is significantly impacted by a person's social, cultural, ethnic and spiritual background and beliefs. Review the following, which explains some of the bereavement beliefs and rituals associated for some of the common religious groups in the UK:

  • Many Western people expect men and women to grieve differently - typically, women are encouraged to grieve openly, whilst men may be expected to be more stoic.
  • People from many east-Asian cultures are also expected to be stoic during bereavement.
  • Many people from Greek and Lebanese cultures grieve openly, often wailing and crying loudly. Many Muslim people also display their grief in a similar way, perhaps also slapping and hitting their bodies.
  • Some Sikh people believe that excessive grief interferes with the peaceful departure of the deceased person's soul; furthermore, they believe open grief may attract jado-tuna (the 'evil eye'). Therefore, Sikh people may not grieve openly.

As described in previous chapters of this module, it is important that nurses working in palliative care settings do not assume they 'know' a person's wishes or rituals and care of the body, just because a person identifies themselves as belonging to a particular culture or religion. Nurses must always as a person about beliefs and rituals relevant to their palliative care.

This chapter focuses on the experience of loss, suffering, grief and bereavement in a patient's family / carers / significant others, and in nurses and other health care staff. However, it is important for nurses working in palliative care settings to bear in mind that a patient may also experience loss, suffering, grief and bereavement in relation to their own death. As discussed in detail through previous chapters of this module, the psychological support of a patient receiving palliative care is a crucial consideration for nurses.

Stages of grief

It is important for a nurse to recognise that grief is a highly subjective experience, and that each person will transition through a grief process in a different way. In a seminal study, conducted and published in 1969, and involving more than 200 patients with terminal cancer, a psychologist named Elisabeth Kubler-Ross identified that people typically transition through five phases of grief in relation to death. These phases are:

  1. Denial, when a person experiences shock and disbelief at death (actual or impending).
  2. Anger, when a person becomes angry that the death is or has occurred.
  3. Bargaining, when a person wishes they could postpone or reverse the death.
  4. Depression, when a person begins to express feelings of guilt or sadness.
  5. Acceptance, when a person begins to learn to cope with the death.

It is important to remember that people will transition through these phases of grief in different ways. A person may not move through the phases in order, and they may not experience all the phases.

Normal versus pathological or complicated grief

It is important for nurses working in palliative care settings to recognise the difference between normal and pathological grief. Grief, though unpleasant, is a normal response to loss. In addition to grief, people may experience a range of other complex, though normal, emotions related to a client's death - including guilt, anger and / or denial. The emotions a person may experience in relation to death may also include positive emotions, such as relief that the patient's suffering has ended. It is important to remember that, as described in previous sections of this unit, grief is a process (though one which people may experience in different ways), and one that must be transitioned through to reach a point of acceptance.

In some cases, people may not transition through the grief process properly - and grief may become pathological and / or complicated. In these cases, grief becomes severe to the extent that it is problematic. In some cases, people with a pathological or complicated grief process will enter clinical depression. It is important to note that, even though they are distinct entities, many of the signs of grief overlap with those of clinical depression. Unlike grief, clinical depression is a mental illness which requires some form of intervention.

There are three basic types of pathological or complicated grief reactions:

  • Delayed grief, which occurs when a person experiences grief in relation to a death which may have occurred many weeks, months or even years previously.
  • Inhibited grief, which occurs when a person never grieves a death or other loss.
  • Chronic grief, which occurs when grieving is unending and the person's intense emotions in relation to their loss never relent. This often occurs when a person is not provided with opportunities to speak about, and come to terms with, their loss. Consider the following case study example:

Example

When she was a young child, Amal's father committed suicide. His death was never spoken about in the family; this is because Amal's family is Muslim, and suicide is believed to be a sin. Because she has had no opportunity to come to terms with her loss, Amal continues to grieve her father well into her adulthood.

It is difficult to identify people who are at risk of developing pathological or complicated grief. Generally, people who are considered to be at increased risk of developing pathological or complicated grief are those who:

  • Have a poor level of wellbeing prior to experiencing a loss - particularly if they have pre-existing mental illness and especially if this is poorly-managed.
  • Experience negative emotions related to their experience of grief - for example, disbelief, yearning, anger, depression, etc.
  • Are male - men are considered to be more at risk of pathological or complicated grief because men are often expected to be stoic and may not be able to grieve properly.
  • Are poorly supported, or lack strong social or cultural networks.
  • Experience death which is unexpected, untimely or traumatic,
  • Have dysfunctional coping strategies - for example, hostile or sullen approaches.
  • Self-medicate with medication or alcohol.
  • Fail to view the deceased person's body, if they consider this important.
  • Deny, or otherwise fail to accept, that the death has occurred.
  • Fail to care for themselves (physically and / or psychologically).

Grief and bereavement support for families / carers / significant others

In supporting families / carers / significant others through experiences of grief and bereavement, palliative care nurses have three fundamental roles: (1) facilitating the grieving process by assessing each person's grief, (2) assisting the person with issues and concerns related to their grief, and (3) providing referral and support options.

It is important to note that there are a range of bereavement care and support services available to people in the UK. These include:

  • General practitioners and community nurses
  • Mental health services
  • Counselling services (face-to-face, online, telephone)
  • Peer bereavement support groups (face-to-face, online)
  • Specialist services (e.g. grief related to the death of a child, parent, etc.)
  • Services provided by hospitals, community health centres, palliative care agencies, volunteer groups and church / religious organisations.

It is essential that nurses working in palliative care settings inform a patient's family / carers / significant others about the grief support systems and bereavement care services available to them. This may be done in a range of ways. For example, nurses may speak to a grieving person about the services available to them, and discuss with them their preferences and referral options. A palliative care organisation may also provide this information in printed leaflets and newsletters for public access. It is important that nurses working in palliative care settings are familiar with the grief and bereavement support services available in the region in which they work.

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In addition to directing people to specialist grief and bereavement support services, it is important that nurses working in palliative care settings become comfortable talking with people about death and their associated emotions. This includes nurses using communication strategies such as:

  • Telling the person they are sorry for their loss, in a genuine way.
  • Acknowledging that they cannot possibly imagine how the person is feeling.
  • Asking about the person's loved one, if they wish to reminisce.
  • Asking the person what they need, if they know.
  • Helping the person to connect with those who can support them.
  • Asking the person if they wish to speak with the patient's doctor or care team.
  • Asking the person if they would like to speak with a social worker or pastoral carer.
  • Discussing with the person how if they want to spend time with the patient.
  • Making the goodbye comfortable by explaining to the person what they will see.
  • Offer 'memory making' options (e.g. hair locks, thumb / hand prints, etc.).
  • Answer the person's questions about what happens next to the patient, and other questions.
  • Acknowledging that they do not know what to say, if this is the case.
  • Giving the person space, if this is what is required.
  • Letting the person know who can be contacted for support in the next days, weeks, months.
  • Avoid judgement in relation to the way the family expresses their grief.

Nurses should avoid saying the following to people experiencing loss, suffering, grief and bereavement:

  • "I know how you feel" - because they do not.
  • "He / she is in a better place now" - this may not be consistent with the person's religious or spiritual beliefs, and it may enhance the person's sense of loss.
  • "It will get easier over time" - although this is often the case, a person may see this as impossible and they may fear losing memories of the patient.
  • "You can always remarry" or "You can always another child" - projecting into the future can be distressing, particularly when a person is focused on their immediate situation.
  • "Everything happens for a reason" - though some people take comfort in the idea of a 'greater plan', death causes many people to question their religious / spiritual beliefs.
  • "Don't cry" or "You need to be strong" - as part of their grieving process, some people must cry and they should be encouraged to do so.

One of the most important communication skills a nurse can use when supporting a family member / carer / significant other during their grief and bereavement is active listening. As you saw in an earlier chapter of this module, this involves listening fully to the person with the aim of identifying, understanding and acknowledging the (often subtle) message/s they are communicating. The nurse should engage with the person by facing the person, maintaining eye contact and mimicking their body language (as appropriate). Consider the following example of active listening:

Example

Bereaved spouse:

"In a way, I'm glad that John has died, because he's finally out of pain. But sometimes I experience guilt, too."

Nurse:

"Guilt - why is that?"

Bereaved spouse:

"Sometimes I think we didn't do enough to make John comfortable in his final days. You know, he was in significant pain for most of Tuesday."

Nurse:

"You wonder if perhaps his pain wasn't managed as well as it could have been?"

Bereaved spouse:

"Yes, I do wonder a lot about that. I know he was receiving pain relief through a drip, but I also worry that hastened his death…"

Nurse:

"I can see these issues related to John's pain relief are really worrying you. If I arranged a time for you to speak with John's doctors about these issues, and for them to answer your questions about the medications used, would that be helpful?"

Bereaved spouse:

"Oh, yes, that would be fantastic - thank-you."

When supporting family members / carers / significant others through experience of grief and bereavement, nurses must consider the following:

  • Helping the person to accept that the loss is real by providing sensitive, factual information.
  • Encouraging the person to express their feelings, particularly with others they are close to.
  • Encouraging the establishment of new relationships (e.g. in support groups).
  • Allowing time and space for the person to grieve, as they choose to do so.
  • Supporting a person to realise that grief is normal and healthy.
  • Provide continuing support, including community-based resources and follow-ups.
  • Be alert for signs of pathological grief, and respond early and proactively to these.

It is important for nurses working in palliative care settings to recognise that children from above the age of approximately 6 months experience loss, suffering, grief and bereavement in relation to a loved one's death just as acutely as do adults. Children under the age of 5 years frequently see death as reversible and magical (e.g. they may ask when their loved one will 'wake up', or what will help them to do so, etc.). Children may also have significant worries about who will care for them and / or that remaining caregivers will also die or leave them. Children who experience loss, suffering, grief and bereavement need continuous support and comfort. Caregivers should provide honest and realistic information in response to the child's questions, and gently remind the child that the loved one will not return. Acknowledging the child's sadness and encouraging the child to express this is important. Children should be encouraged to participate in death rituals (e.g. funerals) if they wish to do so, and to use strategies to remember their loved one. The child's environment should be stable and structured, with normal routines followed to the greatest extent possible.

It is essential that palliative care services consider the importance of following up with people who have experienced grief and bereavement. This may include formal activities, to promote acceptance and closure (e.g. non-denominational memorial events, etc.), and support services for people who have experienced losses to a particular type of disease (e.g. cancer, etc.). It may also include informal activities - such as follow-up telephone calls from a trusted carer to see how a person is coping with their experience of grief, and if they require any additional support services, etc. Remember: providing ongoing support after the death of a person is a characteristic of high-quality palliative care.

Grief and bereavement support for colleagues and self

Nurses and other health care professionals are encouraged to maintain composure when caring for a person at the end-of-life, and during their death. However, good palliative care requires nurses to emotionally engage with a patient and their family / carers / significant others - and this can lead to true loss, suffering, grief and bereavement when the person dies. A nurse's emotional response to the death of a person can be significant. Read the following:

Quote

The first time we, as nurses, lose a patient, it can be extremely difficult. In fact, most nurses can always recall the circumstances surrounding their first patient's death. When this happens, the new nurse needs to be supported by her colleagues, and she needs to be shown that grieving and "feeling" is a part of nursing. Some patients will touch us in sincere ways, and the loss that accompanies their death can be difficult. Being supported by colleagues and being shown that grieving is healthy, and having coping strategies to get through this loss, is crucial.

Ward, 2012.

It is important that nurses working in palliative care identify and reflect on their own emotional responses to death. Understanding your own emotional responses ensures you will be more prepared for, and therefore more able to respond appropriately to, the emotions you will experience in response to the death of a patient. This, in turn, will improve your ability to care effectively for the patient (and other patients), their family / carers / significant others, your colleagues and yourself.

One of the most important strategies to support nurses and other health care staff in managing grief and other complex emotions is debriefing. This involves sharing with colleagues or professionals (e.g. counsellors, psychologists, psychiatrists, etc.) information about, and emotions related to, a significant event or critical incident. The fundamental purpose of debriefing is to allow staff to better understand how they handled the event - that is, what they did effectively and what they can improve on in similar future incidents. Debriefing sessions of this type are also important in allowing colleagues to come to terms with the event in a safe and understanding space, to demonstrate support for each other and to share coping strategies - all important features of ensuring emotional wellbeing. It is important that nurses working in palliative care settings familiarise themselves with the debriefing opportunities provided by the organisation they work or.

It is important for nurses working in palliative care settings to remember that debriefing is designed to benefit their colleagues, as well as themselves. Nurses should recognise and acknowledge their colleagues' experiences of loss and grief, and encourage their colleagues to share their emotions and concerns in relation to the death of a patient. Nurses should also listen and respond in a non-judgemental way to their colleagues' experiences and needs. As a part of their debriefing activities, nurses working in palliative care settings may consider:

  • Recognising the loss of a patient (e.g. by placing a photograph next to a vase of flowers, or creating an entry in a memory book, etc.).
  • Supporting attendance at funerals / memorial services (with the family's permission).
  • Organising policies and procedures to inform off-duty staff of the death of a patient for whom they have cared, if these are not already in place.
  • Promoting open discussion, reflection and sharing of information about clinical practice related to the provision of palliative care services.
  • Participating in education and training to improve the provision of palliative care services.

In addition to engaging in debriefing activities, there are a number of other self-care strategies that nurses working in palliative care settings may use to maintain their emotional wellbeing. Regular exercise, good nutrition, diversional activities (e.g. hobbies), relaxation strategies (e.g. meditation, massage, etc.) and focusing on the positive dimensions of the palliative care role are all important strategies. Nurses may find solace from engaging in religious or spiritual services. Nurses should also be encouraged to take regular, scheduled breaks from the palliative care setting to enable them to 'recharge', both physically and psychologically. Nurses should also consider their own previous experiences with death, both personally and professionally, and reconcile their feelings in relation to these experiences.

It is important to highlight that nurses working in palliative care settings are at significant risk of complex grief associated with cumulative losses. Over time, when a nurse experiences multiple losses and is poorly supported, this can take a significant emotional toll. Spending large amounts of time in the company of others who are grieving, and dealing with complex ethical issues associated with the end of life, can also have a detrimental impact on a nurse's emotional wellbeing. Nurses who are at increased risk of experiencing complicated grief are those who:

  • Have long, close relationships with the person who has died.
  • Witness deaths which are distressing.
  • Lack knowledge / skills / confidence in delivering high-quality palliative care.
  • Lack knowledge / skills / confidence in discussing death and dying.
  • Lack a psychologically-supportive work environment.
  • Experience other work-related stresses (e.g. time pressure, workload, etc.).
  • Have had previous difficult grief / bereavement experiences and / or accumulated grief.
  • Experience stress or other challenges in their personal life.

There are many signs which indicate that a nurse working in a palliative care setting may be having difficulty coping with the grief and other complex emotions they experience in the course of their day-to-day role. These signs include:

  • Psychological signs: anxiety and / or depression; disproportionate worry, insecurity; insomnia; difficulty concentrating and making decisions; substance use (i.e. self-medicating); over-indulging in food; withdrawal from social contact; loss of interest in work, and a decreased quality of work; an irrational fear of death and dying, etc.
  • Physical signs: generalised aches (e.g. muscle pain, joint pain, headaches, etc.); immune-compromise and chronic illness / infection; gastrointestinal upsets (e.g. indigestion / reflux, diarrhoea, ulcers, etc.); hypertension, skin problems, etc.

Where a nurse working in a palliative care setting identifies that they are having difficulty coping with the grief and other complex emotions they experience in the course of their day-to-day role, it is essential that they raise this issue with their supervisor and other appropriate persons (e.g. counsellors, psychologists, psychiatrists, etc.). These people will be able to provide support, including skills to enable the nurse to manage grief in a healthy way.

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Conclusion

As you have seen throughout this chapter, it is important for nurses working in palliative care settings to recognise that loss, suffering, grief and bereavement are normal, universal experiences in response to a person's death. Nurses will observe these issues in the patients for whom they care, in their families / carers / significant others, in their colleagues and in themselves. In this chapter, you have studied a variety of strategies you may use to effectively manage loss, suffering, grief and bereavement in patients' families / carers / significant others, in your colleagues, and in yourself. In doing so, you have learned how to promote emotional wellbeing among those in the palliative care context.

This chapter concludes this module. In this module, you have been introduced to the challenging, but ultimately diverse and rewarding, field of palliative care nursing. You have learned how to communicate and collaborate in the provision of palliative care services, and how to assess and care for patients in palliative settings in a holistic way. You have studied the palliative care management of cardiac and lung diseases, neurological, renal and liver diseases, and cancer and communicable diseases, and their associated symptoms. You have also learned how to manage pain and other complex symptoms in the palliative care setting. Finally, you studied how to care for a person at the end of their life, and during and after death, and how to care for the person's family / carers / significant others, your colleagues and yourself in the palliative care context. This module has provided you with the fundamental skills and knowledge you require to provide high-quality nursing care to patients in palliative care settings.

Reflection

Now we have reached the end of this chapter, you should be able:

-To define the concepts of loss, suffering, grief and bereavement.

-To explain the factors impacting the experience of loss, suffering, grief and bereavement.

-To list the stages of grief through which a person may transition.

-To identify normal and healthy, versus complicated and pathological, grief.

-To explain grief and bereavement support strategies and resources appropriate for use when working with families / carers / significant others in palliative care settings.

-To explain grief and bereavement support strategies and resources which may be used to support nurses and other health professionals in palliative care settings.


Reference list

Blum, CA (2014) Practicing self-care for nurses: A nursing program initiative. The Online Journal of Issues in Nursing. Retrieved from: http://www.nursingworld.org/MainMenuCategories/ANAMarketplace/ANAPeriodicals/OJIN/TableofContents/Vol-19-2014/No3-Sept-2014/Practicing-Self-Care-for-Nurses.html

British Medical Association. (ND). Self-Care: Q&A. Retrieved from: https://www.bma.org.uk/-/media/files/pdfs/about%20the%20bma/how%20we%20work/professional%20committees/patient%20liaison%20group/plg_selfcare_jan2015.pdf

Faull, C., de Caestecker, S., Nicholson, A. & Black, F. (Eds). (2012). Handbook of Palliative Care (3rd ed.). Hoboken, NJ: Wiley-Blackwell.

Matzo M. & Witt Sherman, D. (Eds). (2010). Palliative Care Nursing: Quality to the End of Life (3rd ed.). New York, NY: Springer Publishing Company.

Royal College of Nursing. (2016). Self-Care. Retrieved from: https://www.rcn.org.uk/clinical-topics/public-health/specialist-areas/self-care

Ward, J. (2012). How to Ease the Pain of Losing a Patient for the First Time. Retrieved from: http://www.nursetogether.com/how-ease-pain-losing-patient-first-time


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