CHAPTER 36 Palliative care
At the completion of this chapter, and with further reading, students should be able to:
• Outline the philosophy of palliative care
• Describe a multidisciplinary approach to palliative care
• Identify a range of physical and psychosocial symptoms that may occur in the client who is dying
• Identify nursing interventions to address physical and psychosocial symptoms
• Identify nursing interventions to support family
• Describe grief and the purpose of grief
• Identify nursing interventions to support grief responses in the client and family
• Discuss how nurses may be supported in providing palliative care
Palliative care is the specialised care of people who are no longer responsive to curative treatment and who are dying. The aim of palliative care is to provide symptom management by addressing pain and other physical symptoms, and by providing psychosocial and spiritual care. Multidisciplinary teams are required to provide high quality palliative care and nurses are important members of the multidisciplinary team. Nurses provide person-centred and family-centred symptom management with the multidisciplinary team. A caring nurse–client relationship that facilitates psychological and spiritual wellbeing is central to quality palliative nursing.
Mum looked so peaceful and she died while her favourite Frank Sinatra CD played quietly. I am so glad the nurse prepared me for how it would be. I never thought I would cope, but I did, and Mum would have been proud of me.
Death and dying is a part of life. However, the concepts of death and dying are uncomfortable for most people. Although death is common in older people it can occur at any age. Care of people and families experiencing death and dying is central to the nursing role (McLean Heitkemper et al 2008). Therefore, nurses require understanding of, and skills in, palliative care. This includes an understanding by the nurse of others’ attitudes, feelings and beliefs about death and dying. Importantly, nurses require an understanding of their own attitudes and feelings about death and dying and how these might influence the nursing care they provide (Egan 2010; McLean Heitkemper et al 2008).
Understanding that people and families respond very differently to death and dying is essential to quality nursing care. People’s responses to death and dying have been learned from their family of origin and also from the culture they come from (Berger et al 2006; Leininger & McFarland 2002). Feelings about death and dying can also reflect the client and family adjusting to their pending loss. Where possible, the nurse builds a trusting, caring relationship with the client and their family. When the person and their family trust the nurse they are more likely to disclose their beliefs and feelings about death and dying. The person and the family are the experts about their feelings and beliefs. Empathic listening is essential to quality nursing care (Egan 2010). The range of feelings people can experience during death and dying include sadness, anger and fear; or relief and acceptance of death as a natural event (Egan 2010). Some people experience considerable fear about dying. Common fears include:
• Fear of pain and isolation while dying
• Fear of the unknown, of nonexistence
• Fear of what happens after death (Berger et al 2006; McLean Heitkemper et al 2008).
A nurse needs to support the client who is dying and their family in whatever feelings they experience. All people process and experience their feelings differently. There is no expected outcome per se and no ‘right’ or ‘wrong’ feelings or sequence of feelings in death and dying (Berger et al 2006). Some people will express feelings of acceptance and some people will not. This is demanding on the nurse as the nurse is faced with the challenge of tolerating very difficult feelings in the person and in themselves. A nurse needs to accept all feelings as valid and be respectful and empathic (Egan 2010).
A person who is facing their own death may ask the nurse difficult questions such as, ‘Am I going to die?’ Many nurses, understandably, will be uncomfortable with these questions. The nurse’s response depends on many factors, such as:
• Has the person and/or their significant others been informed of the prognosis?
• What is the person’s stage of growth and development, and their level of understanding?
• Have the significant others requested that the person’s prognosis be withheld from them, and is this a reasonable request?
• Are the nurses caring for the person adequately supported by experienced and specialist nurses, and by the multidisciplinary team? Have they been prepared adequately to deal with such questions?
There are no standard answers to questions that may be asked by people who are dying. If a person asks the nurse such a question this indicates that they trust the nurse (Egan 2010). It also suggests that they wish to discuss their feelings about their death. Nurses may feel able to engage in a conversation about the person’s feelings about death and dying. Alternatively, they may prefer to refer the person to an experienced nurse, a palliative care nurse specialist or relevant member of the multidisciplinary team such as a counsellor or psychologist (Berger et al 2006). Additionally, the nurse can prepare themselves to improve their understanding of the issues that surround death and dying, and of relevant counselling approaches. For example:
• Reading recommended literature, particularly in relation to the individual dying in a healthcare setting
• Discussing aspects of death and dying and their own feelings and attitudes with experienced nurses, palliative care nurse specialists and bereavement counsellors
• Attending in-services, seminars, courses or other related educational forums to broaden skills and knowledge.
Discussing death and dying is still considered by many people to be morbid or in poor taste, and western culture tends to deny death (McLean Heitkemper et al 2008). The experience of death and dying is perceived by many in western culture as a personal and private matter. It is interesting to note, however, that contemporary society’s attitudes are changing (McLean Heitkemper et al 2008). Expressing grief is increasingly seen as a normal and healthy response. This is evident in recent world examples, such as the public responses to the deaths of thousands of people in Japan and New Zealand following the earthquakes affecting each in 2011.
Palliative care is the specialised care of people who are no longer responsive to curative treatment and who are dying (New Zealand Ministry of Health 2001; O’Connor 2008). The aim of palliative care is to achieve the best possible quality of life for both the person who is dying and for their family. This includes symptom relief, psychological and spiritual care, care in regard to grief and loss and care of the person who is dying and their family in the terminal phase of the illness (O’Connor 2008). Palliative care aims to relieve distress and suffering, and keep the person comfortable without hastening or postponing death. Holistic care, that is person- and family-centred, is essential to quality palliative care and a ‘good death’. Palliative care respects the dignity of the person who is dying and their family (Berger et al 2006; New Zealand Ministry of Health 2001). The focus is on the person’s and the family’s needs and wishes in accordance with their cultural and spiritual beliefs. Where possible, care is provided in the environment of the person’s choice such as in the home or in a hospice. Holistic palliative care is dependent upon multidisciplinary teams including nursing, medical and allied health professionals, and on volunteer services.
Those providing palliative care in a multicultural society require sensitivity to differences in the way people from various cultures understand issues surrounding death and dying. For example, pain and suffering, and quality and meaning of life, may be interpreted quite differently cross-culturally and intra-culturally (D’Avanzo 2007; Leininger & McFarland 2002). Sometimes judgments and care decisions are influenced by the nurse’s personal cultural values. It is important to avoid making assumptions about the client’s wishes by asking the client what is preferred in relation to all treatment, care and quality-of-life activities (Berger et al 2006). For example, prayer rites and readings from the Quran are important during death and dying for many Muslim peoples (Cheraghi et al 2005). Therefore, the client and family may wish for an imam to support them during this experience.
Palliative care is not an alternative to other care but is complementary to and a vital part of total patient care. A person who receives palliative care will have an active, progressive and advanced disease with little or no prospect of cure (New Zealand Ministry of Health 2001; O’Connor 2008). Palliative care can be an approach to care provided by generalist healthcare professionals who may consult with palliative care specialists. Alternatively, palliative care may be provided within a funded specialist service that provides care in partnership with generalist health practitioners, for example, in community-based home care (O’Connor 2008). Palliative care may also be provided solely by specialist services as, for example, occurs in many hospices. In some countries such as Australia, people receive palliative care within a funded specialist service, generally in the last 6 months of their life (Victorian Department of Human Services 2011).
Throughout this chapter the term ‘family’ is used to represent all people identified by the person who is dying as being significant to them. Family therefore includes partners, relatives, friends, neighbours and anyone else providing support (Maher & Hemming 2005). Palliative care involves grief and bereavement support for the family that extends throughout and beyond the duration of the illness.
Anyone who has an illness that is not responsive to curative measures can receive palliative care, regardless of age, gender, class, culture, race and religion or belief system (O’Connor 2008). Most people receiving palliative care have cancer, but some have progressive chronic neurological problems such as motor neuron disease or multiple sclerosis. Others have acquired immune deficiency syndrome (AIDS), Alzheimer’s disease or end-stage heart, lung or kidney failure. As the concept of palliative care develops, more specialist palliative care teams are caring for people with illnesses other than cancer (Berger et al 2006; O’Connor 2008). Palliative care measures are also implemented for residents living in aged-care facilities who are in the last stages of life. Clinical Interest Box 36.1 provides an example of how palliative care may be implemented in the residential care environment.
CLINICAL INTEREST BOX 36.1 Residential care—an enrolled nurse’s experience of palliative care
Last week I was with Vera when she died. Her only living relative, her sister, was too frail to come, and I wanted to be there with her. The other nurses took on extra work so that I could do that—we do it for each other so we can give special attention to our residents when they are dying. It is the policy here that no resident dies alone. I like that. Where I worked before I saw too many residents left to die on their own and it was so clinical and uncaring. Here we have a kit ready for palliative care residents. We have a cassette player, aromatherapy, a special bedside light with a pink globe and we always pick flowers from the garden. We make it special; the soothing atmosphere we create makes it easier on us nurses and it helps relatives too.
Sue, Enrolled Nurse, working in aged care
Quality person-centred and family-centred care depends on empathic nurse–client caring relationships. A quality nurse–client caring relationship is built on trust and respect. This requires that the nurse has excellent interpersonal and communication skills, cross-cultural nursing skills, is able to listen empathically and tolerate hearing difficult feelings and attitudes that may or may not match the nurse’s own beliefs (Maher & Hemming 2005). The relationship forms the foundation for the client and their family to express their feelings, thoughts and beliefs about death and dying. At times, the nurse will not know what to say or how to respond to the person. It may be appropriate to share this with the client and family (Stein-Parbury 2009). Importantly, a quality nurse–client caring relationship can also provide a foundation for joy, remembering and finding meaning in life for the person and their family. Clinical Interest Box 36.2 provides an example of open communication between a nurse and a client.
CLINICAL INTEREST BOX 36.2 A caring nurse–client relationship facilitates discussing feelings about dying
Jack was subdued and thoughtful while the nurse gave him his wash in bed, then he said quietly, ‘This isn’t going to improve, I’m not going to get better. I’m not going to see my children grow up.’ The nurse replied, ‘Yes, Jack, that’s right, and that must be terribly sad for you to think about.’
Nurses acknowledge such statements thereby demonstrating open communication and a willingness to listen to the client’s feelings. Jack can express his sadness to the nurse who listens to his fears and feelings. This may assist Jack to discuss other feelings about his approaching death and his experience of dying with the nurse.
The provision of high quality palliative care means that clients and families need access to support from a coordinated multidisciplinary team (Victorian Department of Human Services 2011; O’Connor 2008). This includes generalist healthcare professionals and those with specialty training in palliative care. The team includes medical officers, nurses, allied health workers, counsellors, chaplains and volunteers. The knowledge and expertise of the multidisciplinary team combines to help people live as fully as possible and maximise their quality of life within the increasing limits of the illness (O’Connor 2008). Clients and their families are encouraged to actively participate in all aspects of their care including care planning and care delivery.
Palliative care aims to help clients and their families feel in control of the quality-of-life and symptom management decisions, including the decision about where care will be provided. Palliative care can be provided in the person’s own home, a specialist in-patient hospice unit, an aged-care residential unit, a hospital or other healthcare facility (O’Connor 2008).
Many people wish to die at home (O’Connor 2008). Community-based generalist nursing services, palliative care services and general practice services provide care in partnership with palliation clients and their families to enable this wish to be fulfilled. When a person prefers to die at home, nurses assist family members in providing care. The nurse may also be required to provide counselling and teaching services; for example, teaching a family member how to sponge the person in bed or how to assist them safely to a commode (Berger et al 2006; O’Connor 2008). Nurses also support clients and their families to manage symptoms associated with palliation.
Specialist palliative care services provide palliative care nurse specialist and medical specialist care, and offer a wide range of other services and supports (O’Connor 2008). These include counselling, bereavement support and pastoral care, occupational therapy, physiotherapy, relaxation and music therapy, dietary advice and loan of equipment. Many of these services and supports are offered at a day centre or, if the client is unable to attend, in the home. Trained volunteers play an important role in providing various forms of assistance, including respite for family members and bereavement support (Victorian Department of Human Services 2011). Clinical Interest Box 36.3 provides an example of when home-based palliative care can help.
CLINICAL INTEREST BOX 36.3 Home-based palliative care
When Grace was diagnosed with an inoperable brain tumour she and her partner Geoff decided that they wanted to spend their remaining time together at home with family and friends. A multidisciplinary team including community palliative care, district nursing and general practice provided care to Grace and Geoff over 4 months. Family and friends were very important to Grace and Geoff and they visited daily. In accordance with Grace and Geoff’s wishes, Grace died peacefully with her family around her at home.
A hospice unit is an inpatient unit where specialist health professionals care for people with incurable illnesses (O’Connor 2008). Clients are admitted to a hospice in the last stages of their illness and remain until death occurs, or they may be admitted for assessment and relief of pain or other distressing symptoms and then return home. Admission to a hospice can also provide support for a client who is experiencing emotional distress or anxiety (Victorian Department of Human Services 2011). Sometimes clients are admitted for a period of respite care. Respite care provides a break for a carer or family member. The aim of an inpatient hospice unit is to provide expert care in a calm environment that is as home-like as possible. Palliative care units in busy mainstream hospitals are not always able to provide the same calm atmosphere as a hospice (O’Connor 2008). Clinical Interest Box 36.4 provides an example of when hospice-based palliative care can help.
CLINICAL INTEREST BOX 36.4 Elaine’s story—in hospice care
When the specialist told me I had the secondary tumours in my liver and in my lungs, my head just started to spin—I was laughing, then crying, but I felt like running away. My mum was with me—she just sat there with tears pouring down her face. We’ve been through hell and back, Mum and me, first with the surgery and the chemotherapy, then the pain and nausea, and then me being so weak. I’ve lost everything to this cancer—my looks, my job and my hopes of ever getting married or being a mum myself. I can’t do much for myself now and until I came into the hospice I was feeling so down, so weak and useless. I feel better about myself now, emotionally stronger. The nurses make me feel that I matter, and I am happy to be here until the end because I feel I will matter until the very last moment.
Elaine, aged 27, 6 weeks before dying of metastatic breast cancer
Palliative care affirms life and regards dying as a normal process. All care is therefore aimed at relieving pain and other symptoms. The client may have symptoms that relate to physical, emotional or spiritual concerns (Old & Swagerty 2007). Physical comfort is a priority and essential if palliative care work is to be effective (McLean Heitkemper 2008). However, emotional or spiritual concerns can affect physical symptoms. Therefore a holistic approach is necessary in symptom management. Many clients experience multiple symptoms concurrently. Pain is a common symptom, however not all people experiencing palliation report pain.
Symptom management requires thorough assessment and possibly referral to the relevant member of the multidisciplinary team (Maher & Hemming 2005). Excellent communication and discussion with the multidisciplinary team is essential to effective symptom management. Assessment must always precede intervention to establish the causes of the symptoms wherever possible (Ersek et al 2008). Cultural factors must be included in symptom assessment in order to tailor symptom management to the needs of the person and their family. Symptom management aims to minimise or eliminate pain and disability, and maximise comfort and functioning (Ersek et al 2008). Any concurrent additional disorders developing over the palliation episode of care (e.g. infections) are diagnosed and treated as necessary. Once treatment is initiated, nurses are involved in reviewing and evaluating the effectiveness of the intervention.
Symptoms other than pain are commonly experienced by people who are dying (Berger et al 2006). These include symptoms requiring physical care and psychosocial and spiritual care (Stein-Parbury 2009). Common physical symptom areas to be included in an assessment are pain, changes in body weight, nausea and vomiting, constipation or diarrhoea, fatigue and dyspnoea (difficulty breathing). Psychosocial and spiritual care issues include challenging emotions such as anxiety, depression and fear and grief and loss (Berger et al 2006). Quality nursing care is focused on meeting the person’s treatment and physical care needs and psychosocial and spiritual needs.
Pain is a common symptom, in particular when the person has a cancer illness. Woodruff (2004) defines pain as ‘what the patient says hurts’. It emphasises that ‘a patient’s pain is what they describe and not what others think it ought to be’. Modern pain management means that palliative care clients should be almost pain free throughout their illness (Woodruff 2004; World Health Organization 2008). A variety of nursing interventions, including pharmacological and nonpharmacological approaches, provide relief from pain and physical discomfort (Ersek et al 2008). Nurses promote and undertake medication management including supporting clients’ self management of analgesic medications through health teaching. Nurses also provide advice regarding application of heat and cold packs, positioning and support of limbs; for example, by application of a splint. They further advise the person and family about gentle exercise and rest (Ersek et al 2008).
Assessment of pain is vital to effective pain relief. Pain can stem from injury and disease in any part of the body including internal organs and viscera, skin and connective tissue and nerves (Litwak 2009). Expert assessment is vital to identify the cause of the pain, and the type of intervention and/or medication that will be most effective (Ersek et al 2008). Pain assessment is a core skill of the palliative care nurse and palliative care physician.
Analgesic medication is the primary method of controlling pain (Ersek et al 2008). Analgesic drugs include opioids, such as morphine, and non-opioid analgesics such as paracetamol and non-steroidal anti-inflammatory drugs. Analgesics may be administered as slow release oral preparations, rectally or as injections (Ersek et al 2008). Additionally, adjuvant medications may be prescribed. These medications are not analgesics; however, they have pain relieving properties, particularly when prescribed with analgesics (Ersek et al 2008). Adjuvant drugs include antidepressants, anticonvulsants and corticosteroids (Ersek et al 2008; Foyle & Hostad 2007). Combination analgesic and adjuvant drug therapies are common in palliative care.
Advances in pain-reduction techniques have seen the introduction of analgesics such as fentanyl patches that can be applied to the skin (Ersek et al 2008). Fentanyl is a potent synthetic opioid medication. When a person is prescribed fentanyl patches, nurses must take extreme care in administering any additional opioid medications such as morphine because of the significant risk of overdose (Ersek et al 2008; Tiziani 2010).
Other pain-relieving medical interventions used in palliative care include surgery, radiotherapy, nerve blocks (injection of anaesthetic agent close to a nerve to cause temporary or permanent blockage in transmission of pain) and chemotherapy (McLean Heitkemper 2008). The benefits must outweigh the burden of these treatments, particularly when there are unwanted severe side effects. In quality palliative care, the person and their family are provided with sufficient information about the risks and benefits of any treatment in order to make an informed decision.
Allied health professionals can also provide effective pain relieving interventions; for example, physiotherapy techniques such as ultrasound and laser therapy can be helpful in managing pain (Ersek et al 2008). Additionally, complementary therapies, such as massage, aromatherapy and guided imagery, can be valuable and are often combined with medical and nursing care to enhance the effectiveness of pain-relief measures, to promote relaxation and to reduce anxiety. People interpret their pain according to their life experiences, values and beliefs (Ersek et al 2008). Some people view the expression of pain as a sign of weakness or a sign that their condition is deteriorating. Some people are fearful of opiate drugs such as morphine because they believe they will become addicted or that it will hasten their death. The nurse plays an important role in counselling, supporting and educating the person and their family about the benefits and risks of analgesic medications and analgesic interventions.
Nursing care is fundamental in addressing many symptom areas as identified in Procedural Guideline 36.1. This includes nursing care of activities of daily living, such as hygiene and mouth care; nursing care of continence difficulties, nursing management of mobility difficulties including positioning and nursing care to maintain skin integrity including pressure care (Foyle & Hostad 2007; McLean Heitkemper et al 2008). Clients are encouraged to eat small nutritious meals frequently to maintain their energy requirements. Nurses encourage clients to maintain hydration by drinking water frequently throughout the day.
Procedural Guideline 36.1 Symptom management
(Foyle & Hostad 2007, McLean Heitkemper et al 2008)
| Symptoms | Identification of issues | Nursing care |
|---|---|---|
| Impaired skin integrity | ||
| Sore and dry mouth | Impaired oral mucous membrane | |
| Continence diffculties | Assess urinary and bowel function | |
| Urinary incontinence | ||
| Bowel incontinence | ||
| Changes in body weight (weight loss) | Imbalanced nutrition: less than body requirements | |
| Constipation or diarrhoea | Alteration in elimination | Assess the client for constipation |
| Constipation | ||
| Diarrhoea | ||
| Nausea and vomiting | Nausea and vomiting | |
| Weakness | Fatigue | |
| Dyspnoea including cough | Ineffective airway clearance | |
| Insomnia | Alteration in sleep patterns | |
| Confusion, restlessness | Alterations in consciousness | |
| Delirium |
Constipation and diarrhoea may be experienced by clients and require thorough assessment to identify the cause prior to treatment (Foyle & Hostad 2007; McLean Heitkemper et al 2008). All people taking opioid medications will become constipated as this is an effect of these medications. Therefore, all people prescribed opioid medications should be prescribed aperient medication concurrently.
Weakness and fatigue can be minimised by coordinating nursing and other care activities in accordance with the client’s wishes and by encouraging frequent rest periods (McLean Heitkemper et al 2008). Nausea and vomiting must be assessed in order to identify the cause prior to treating these symptoms. Generally, nausea and vomiting will be treated with anti-emetic medications. Dyspnoea is a challenging symptom as it causes anxiety in the affected person. Medical assessment and diagnosis is warranted prior to treatment (Foyle & Hostad 2007; McLean Heitkemper et al 2008). Depending on the cause of dyspnoea, acute medical interventions such as surgery or medication may be required. Conversely, in the terminal phases of the illness when the person is near death, dyspnoea is not generally treated because it is a characteristic of dying.
People who are experiencing a terminal illness commonly report insomnia (McLean Heitkemper et al 2008). Nursing assessment is required to ascertain the causes or factors contributing to the person’s insomnia. These factors may be physical or psychosocial. Management will depend on the person’s wishes and may include counselling or medication (McLean Heitkemper et al 2008; Stein-Parbury 2009). Complementary therapies may be effective; for example, relaxation and meditation.
Confusion and alterations in consciousness can occur. These symptoms are more likely in the terminal phases of the illness when the person is near death (McLean Heitkemper et al 2008). A thorough assessment is required to attempt to ascertain the causes of the alteration in consciousness. Management will depend on the cause and contributing factors. Pain, constipation, urinary retention and infections can promote confusion. These problems therefore should be identified and treated where necessary (McLean Heitkemper et al 2008). Alterations in consciousness are frightening experiences for clients and their families. Nurses provide emotional support and reassurance. The nurse or family member should stay physically close to the frightened client and provide verbal reassurance (McLean Heitkemper et al 2008). Nurses encourage family members to participate in care. Where possible, clients with alterations in consciousness should be nursed in a quiet and calm environment.
Maintaining comfort depends on continuous reassessment of the client’s needs because physical changes can occur particularly quickly in advanced illness (McLean Heitkemper et al 2008). Pain can escalate rapidly and, because of fatigue, immobility, inadequate nutrition or emaciation, pressure ulcers can develop in a very short time. During all phases of care the nurse continually reassesses the situation while assisting the client to be as independent as possible (Ersek et al 2008). Symptom management requires effective communication with the multidisciplinary team.
During a terminal illness, emotions such as anxiety, depression and fear are frequently experienced by clients and their families (McLean Heitkemper et al 2008; Stein-Parbury 2009). Grief and loss are also part of the response to death and dying. People express grief and loss differently depending on their family and cultural background, and also depending on personal differences (Egan 2010).
Anxiety is a feeling of unease without knowing the cause or where the cause or contributing factors are not easily identified (Egan 2010). Anxiety is related to fear. People are often more specific about what they fear and commonly report fearing pain, meaninglessness or the unknown. Depression can accompany anxiety (Stein-Parbury 2009). Causes of these challenging feelings can include poorly controlled symptoms such as pain, unwanted effects of medication, family issues or worry about the future for loved ones after the person has died. Nursing care in relation to psychosocial symptoms and spiritual care issues is dependent on the nurse’s ability to listen empathically, build a trusting and respectful relationship and tolerate hearing about feelings that cannot necessarily be ‘cured’.
A supportive and caring nurse client relationship forms the foundation for psychosocial and spiritual care (Egan 2010; Stein-Parbury 2009). Nurses talk to the client and their family about their feelings and provide support (Egan 2010; Stein-Parbury 2009). Nursing interventions will depend on the nursing assessment findings and could include referral to a member of the multidisciplinary team such as a counsellor or bereavement counsellor, education to reduce anxiety and encouragement and ongoing emotional support. Medication management may be part of the treatment plan. At times anti-anxiety medications and antidepressant medications are warranted. In quality palliative care the client and family are involved in all treatment decisions (McLean Heitkemper et al 2008).
Clients, families, nurses and other members of the multidisciplinary team are involved in finding meaning in the death and dying experience (McLean Heitkemper et al 2008). This is understood as spirituality and may or may not include religion. Nurses and the multidisciplinary team are respectful of the different values, beliefs, spirituality and religions of clients and families in palliative care (O’Connor 2008).
The spiritual dimension of each person is unique (Chaplin & Mitchell 2005; Egan 2010; Stein-Parbury 2009). For some people it may be connected to personal religious beliefs and practices. If the rituals and practices are followed the person is more likely to feel spiritually fulfilled, but if they are not observed the person may feel worried and anxious and suffer spiritual distress. Some people do not believe in a specific faith (Chaplin & Mitchell 2005). Their spirituality is nonetheless related to their sense of who they are and the meaning of existence. Nurses caring for people confronted with death may find them searching for understanding of these issues.
The spiritual dimensions of the client who is dying may be reflected in a search for meaning in life, or in their suffering, or in their relationship with others (Egan 2010; Stein-Parbury 2009; Chaplin & Mitchell 2005). It may be reflected in a need for hope, love or a sense of forgiveness. Not all people who are dying experience the same needs, nor do they feel them with equal intensity. The nurse with expertise will be sensitive to the spiritual needs of each client and will implement actions to help those needs to be met (Chaplin & Mitchell 2005; Egan 2010; Stein-Parbury 2009). Some people meet spiritual needs through the rituals associated with organised religion; others may find comfort and meaning in relationships, reading, music, art or meditation.
As with any aspect of caring for the client who is dying, the multidisciplinary team identify how to provide spiritual support together with the client (Chaplin & Mitchell 2005; Egan 2010; Stein-Parbury 2009). Religious leaders including chaplains or priests or pastoral care workers may be important people to involve in the person’s care. The nurse often supports the client in identifying the person they would like to speak to and may arrange a referral.
Hope is an important aspect of psychological and spiritual wellbeing (Mooney 2009). Effective communication is vital when nursing people who are experiencing loss of hope. Nurses are often confronted by clients and families who experience a loss of hope during death and dying (Chaplin & Mitchell 2005; Mooney 2009). Nursing interventions focus on empathic listening. Additionally, nurses express hopefulness to clients and families through psychosocial support. Nurses express hopefulness by reassuring clients and families that the multidisciplinary team will provide expert management of symptoms (Chaplin & Mitchell 2005; Mooney 2009). Nurses also express hopefulness by supporting clients to participate in their lives to the best of their ability. This includes encouraging clients to attend and participate in family or social events, encouraging humour where appropriate and discussing everyday issues.
Nurses further express hopefulness by supporting clients and families to feel empowered (Chaplin & Mitchell 2005; Mooney 2009). Nurses facilitate empowerment by encouraging self-care and the participation of family members in care. Often family members want to care for the person during the illness and at the time of death. The nurse supports family members to provide care safely, in accordance with the client’s and family’s wishes, by providing education regarding the focus of care; for example, hygiene or pressure care, that has been agreed to by the client and family (Berger et al 2006). In the home setting, with support and education from visiting nurses, family members provide the specific care required by their loved one (O’Connor 2008). Empowering relatives supports their understanding of having contributed to a ‘good death’ for their loved one. This can be a source of comfort for family during bereavement after the person dies.
People invariably experience loss and grief in response to death and dying (Mooney 2009). Loss can be actual or perceived, temporary or permanent, and occurs when someone or something can no longer be seen, heard, known, felt or experienced. Feelings of loss and grief can apply to many events. In palliative care, losses are generally related to life itself, relationships, health, lifestyle, independence, freedom and future hopes and dreams (Mooney 2009). All losses affect self-identity (Varcarolis & Halter 2010). The meaning attributed by an individual to a loss is related to the value placed by the individual on the loss. Loss and associated grief cannot be quantified, so it cannot be judged that one person’s loss is greater or less than that of another person.
Loss of an aspect of the self can be devastating and can severely affect a person’s body image and self-esteem (Mooney 2009). Individuals commonly experience grief over the loss of a body part or loss of a physiological function. However, many people adjust to losses throughout their lives and some people gain confidence after coping successfully with loss.
Most people experience grief in response to loss. People grieve very differently. Grief can be influenced by a number of factors including:
• The stage of an individual’s growth and development
• Cultural and spiritual beliefs
• Relationships with significant others
• The meaning of the loss to the person
• Previous loss(es) and coping behaviours (Brown 2007; Cicero 2007).
Grieving is a human response to loss that is thought to assist an individual to adjust to the loss. It generally involves intense and painful emotions relating to loss. Painful feelings diminish with time but may never totally disappear. After any great loss, people return to their lives; however, it is likely that they are ‘different’ (Mooney 2009). A person faced with a serious loss may begin to grieve before the loss actually occurs. For example, older people may experience anticipatory grief as they anticipate the lifestyle changes and losses that old age brings. The process of grieving for a person who is dying is also anticipatory grief. It enables a degree of emotional preparation but, ultimately, the depth of grief is still acute when death eventually does occur (Cicero 2007; Old & Swagerty 2007). Acute grief is a reaction that begins at the time of a loss, for example, loss of a person through sudden death or the loss of a limb as the result of an accident.
While people experience grief in different ways, patterns of grieving have been observed and documented (Mooney 2009). Theorists often describe grief as a process that involves several stages or phases. The stages are identified according to descriptions of the responses commonly experienced by people as they face a loss. One well-known theory or model of the grieving process is that described in the late 1960s by Dr Elisabeth Kübler-Ross, a psychiatrist and renowned authority on the process of dying, who describes the grieving process as having five stages:
By recognising the stages that a grieving person may experience, nurses are better able to understand what is happening and respond appropriately to that person (Mooney 2009). The grieving person may not experience every stage, or may experience the stages in a different order. Although grief may be observed to follow a logical sequence, it is not necessarily a linear process. For many people it is not simply a matter of ‘moving on’ if and when a previous stage is ‘complete’. It is sometimes impossible to differentiate clearly between stages, as a person rarely moves neatly from one to another (Mooney 2009). Generally a person moves back and forth between the feelings of grief until final resolution or acceptance occurs.
The person must be allowed and encouraged to talk and ‘work through’ their grief (Egan 2010). The nurse requires a caring, understanding, empathic approach and an ability and willingness to listen. Nurses cannot grieve for the person, lessen the intensity of their feelings or protect or shield people (even children) from the pain of the grief experience (Mooney 2009). In caring for a grieving person the nurse needs to acknowledge the loss, facilitate the expression of thoughts and feelings and support the person as they move through the different feelings of grieving.
Where the person’s health is significantly affected by their grieving, the nurse refers them to the multidisciplinary team such as the medical practitioner, bereavement counsellor or psychologist.
Caring for a person who is dying is one of the most challenging tasks nurses face (Old & Swagerty 2007). It can be demanding and stressful but can also be very rewarding. Although a nurse cannot control the inevitability of death, there is much that can be done to make the final stages of life as comfortable as possible for the individual and their significant others. It is important for the nurse to recognise that a person who is dying is also a living person and that, as long as people who are dying are alive, they have the same needs as anyone else (Berger et al 2006). As a result of the dying process, some of those needs assume a greater priority than others. Symptom management is an important priority of nursing care (Ersek et al 2008). The overall goal of care is the promotion of physical and emotional comfort and spiritual ease. Even during the dying process the individual should be helped to retain independence. When this is no longer possible, care should be provided in a manner that preserves self-esteem and dignity.
The nurse supports relatives to maintain a close relationship with the person who is dying right up until the time that death occurs (Berger et al 2006). It is helpful to reinforce that, although the sense of touch may be diminished, the client may still be able to feel touch and find comfort in this. It is also often helpful to tell family members that hearing may remain intact up until death. If the person who is dying appears to be unaware of their surroundings and not responding, family are advised to speak to them as if they were conscious. It may be comforting for the person who is dying to be able to hear recognised voices or some favourite pieces of music, and relatives may take comfort in providing this solace for their loved one (Old & Swagerty 2007).
The dying process is often accompanied by discomfort and nursing problems, including breathing difficulties and alterations in nutrition, hydration, elimination, mobility and sensory perception (Berger et al 2006). In addition, the person who is dying may experience acute or chronic pain. A nursing care plan is developed after assessing the person’s needs and, while each individual may have different needs, there are some common problems and some general nursing interventions.
When ambulation is no longer possible, maintenance of good body alignment is an essential comfort measure (deWit 2009). The client should be positioned as comfortably as desired, with bedding and pressure-relieving mattresses and devices placed to enhance comfort. Clients should be gently repositioned every 2–4 hours to promote maximum comfort and prevent muscle soreness, contractures and skin breakdown.
The individual may experience shortness of breath and may be unable to cough or expectorate to clear the airway. When possible, the person should be nursed in an upright or semi-upright position to facilitate breathing (Old & Swagerty 2007). When this is not possible, positioning should be on the side, to prevent aspiration of secretions. Oxygen therapy and oronasopharyngeal suctioning may be required to remove secretions and make breathing easier.
If the client is able to eat and drink, foods and beverages of choice should be provided at the times the client feels like eating (Old & Swagerty 2007). Alcoholic beverages may stimulate appetite. Thirst may be relieved by chips of ice to suck or soda water. Semi-solid, soft or liquid foods may be offered in accordance with the client’s wishes. It is expected that appetite will decrease as death approaches (Berger et al 2006). Death is usually imminent when the client can no longer eat and drink therefore medical interventions, including IV therapy for hydration, are not indicated in palliative care. Nurses provide regular mouth care and continue to provide symptom relief with the multidisciplinary team (Ersek et al 2008; O’Connor 2008). Additionally, families may require considerable support and education from nurses when their loved one is no longer able to eat and drink.
Common problems experienced may include constipation, diarrhoea, impacted faeces, retention of urine and incontinence (of urine and faeces) (deWit 2009). Measures that may be implemented to prevent or alleviate these problems include:
• Laxatives to prevent constipation, if fluid or fibre intake are unable to be maintained
• Rectal suppositories to relieve constipation
• Catheterisation to relieve retention of urine or urinary incontinence
• Protective continence pads and specially designed sheets or external urinary drainage devices, to prevent discomfort and skin breakdown from urinary incontinence
• Maintenance of skin integrity, clean and dry bedding and an odour-free environment.
A clean and moist mouth is extremely important, particularly if the client is unable to swallow (Berger et al 2006; deWit 2009). Mouthwash or rinses are appropriate if the individual is able to expectorate. To prevent the mouth from becoming dry and coated it should be cleansed gently every 2–4 hours. A light film of lip balm should be applied to the lips to prevent skin cracking or to relieve discomfort.
Dryness and corneal irritation can occur as a result of decreased blinking reflexes (Berger et al 2006; deWit 2009). Measures to prevent or alleviate eye discomfort include cleansing the eyelids to remove crusts, instillation of artificial tears and instillation of eye lubricant ointment.
If the client is emaciated and lacks sufficient adipose tissue to support bony prominences, or is unable to move, the risk of developing decubitus ulcers is increased (Berger et al 2006; deWit 2009). To prevent breakdown, the skin should be kept clean and dry, with moisturising lotion applied to counteract any excess dryness. Pressure-relieving devices such as sheepskins or special mattresses should be used, and position changes should occur every 1–2 hours (Berger et al 2006; deWit 2009).
The person who is dying may experience decreasing visual acuity or tactile sensation (Berger et al 2006; deWit 2009). To minimise any anxiety associated with diminished sensory perception, the room should be softly lit and personal possessions should be placed where they can be easily seen or touched by the client. Visitors should sit close by and, if the client’s vision is poor, visitors should tell the person who they are. It may be comforting for family to hold their loved one’s hand.
The sense of hearing is usually not diminished, so it is important to continue to speak in a conversational tone (Berger et al 2006; deWit 2009). Even if the person who is dying appears to be unaware of surroundings, all family and personnel should assume that the person is still able to hear. Some individuals gain comfort from hearing their favourite pieces of music, and relaxation tapes may also be soothing. If the individual is unable to speak, the nurse should attempt to anticipate needs, and people should continue to make communicative attempts even though there may be no reply.
Confusion and restlessness can be caused by physical discomfort such as pain, lack of sleep or retention of urine, or they may be related to medications, such as analgesics, hypnotics and antiemetics (Ersek et al 2008). Restlessness may be related to anxiety or fear from a variety of sources. It is important to determine the cause and implement appropriate care. If no cause can be found, or if the individual remains restless and confused, mild sedation may be considered.
In palliative care contexts, death is generally precipitated by failure of one or more of the three major body systems: the central nervous system, the cardiovascular system or the respiratory system (Berger et al 2006; deWit 2009). As a person approaches death, the following physiological changes begin to occur:
• Loss of muscle tone, which results in relaxation of the facial muscles, difficulty in swallowing, decreased peristalsis, diminished body movement and decreased urine output, with possible incontinence of urine and faeces
• Slowing of the circulation that results in skin mottling, cyanosis of the extremities and cold skin
• Changes in the vital signs: decreased blood pressure, weaker pulse and changes in breathing. The respirations may become rapid, slow, shallow or irregular. Cheyne–Stokes respirations may occur; this is a cyclic pattern of respirations that gradually become more shallow, followed by periods of apnoea (no breathing) (deWit 2009)
• Changes in sensory perception: blurred vision and impaired sense of taste and smell.
Signs of imminent death include loss of reflexes, faster and weaker pulse, noisy breathing due to accumulating secretions in the throat (sometimes called ‘the death rattle’) and inability to move (Berger et al 2006; deWit 2009). It is important to remember that hearing is usually the last of the senses to fail.
Death occurs when breathing ceases completely and the heart stops (Berger et al 2006; deWit 2009). A central pulse may be palpable for a brief period following cessation of breathing. The pupils become fixed and dilated. This is the time of death.
After death has occurred, the significant others may experience shock and disbelief, even if the individual’s death was anticipated (Mooney 2009). Reactions to the death will vary from numbness and immobility, to outbursts of weeping or wailing, or may include expressions of feeling relief or comfort from the fact that their loved one is no longer suffering. The nurse should not discourage bereaved persons from expressing their grief (Egan 2010). If the nurse is also affected by the death and feels like expressing sadness or crying with the bereaved, this may be appropriate. Alternatively, the nurse may prefer to express their own feelings and grief with a colleague in private.
If the significant others were not present at the moment of death the nurse should ask the family if they wish to view the body. Family members may prefer to view the body later at the undertakers. If family members choose to view the body of their loved one in the care facility or in the person’s home the nurse should advise the family about what to expect (Mooney 2009). For example, the skin will be very pale, may be discoloured and will feel cold to touch. Depending on the family’s wishes, the nurse may accompany the bereaved family into the room and remain or leave them in privacy for as long as they wish to be there.
When the bereaved family are ready to leave their deceased loved one, it is appropriate to direct them to an area where they can sit down and where they can be given the opportunity to discuss their response to the experience (Egan 2010).
Bereaved family members are required to carry out various functions following a death, such as collecting the person’s belongings (if the person died in an inpatient setting), informing friends and relatives, notifying a funeral director and arranging a funeral or memorial service. The nurse provides support according to the family’s wishes and may inform the bereaved about relevant supports in the community.
Care of the dying is challenging for nurses (Mooney 2009). It can be very satisfying and also demanding and stressful. Nurses need a network of support to help them cope with these demands. Supports that can help range from personal relaxation activities to professional workplace supports such as specialist education and training, critical incident reflection, clinical supervision and counselling (Mooney 2009).
Palliative care is a speciality area of nursing. Nurses are valuable members of the multidisciplinary palliative care team and provide care to individuals with a life-limiting illness and their families. Palliative care takes place in many different settings, and many people prefer to die at home. In palliative care contexts, dying is a natural process and people who are dying should be empowered to live life as fully as possible within the limits of their illness. The palliative care team aims to meet physical, psychological and spiritual needs that arise for clients at the end of their life and to support the client’s family. Quality palliative care and symptom management has the person and their family at the centre of care. Nurses are an important part of the multidisciplinary team supporting a ‘good death’ for clients in the home and inpatient settings.
1. In what ways does the culture in busy acute care hospitals impact on the experience of clients who are dying? How does it impact on their family members? How might nurses improve the circumstances for the client who is dying and their family in this setting?
2. The specialist has just told you that you have a brain tumour that is inoperable and not curable. Reflect on your own values, attitudes and beliefs and consider what changes would happen in your life as a result of this prognosis. What would you need to help you cope? If you were living in a rural area 2 hours drive from the nearest city, could you easily access health services to meet your needs?
3. Joe, 72, has lung cancer. He has been admitted to the hospice today. He has been a frequent visitor to the hospice day centre over the last few months, and several staff members have noted his positive attitude and how well he seems to have been coping physically and emotionally. Joe’s condition has deteriorated now and he is not expected to live for more than a few more days. He is alert but extremely agitated at the moment. Margaret, his wife, can’t understand this anxiety because he has been so calm throughout his illness. She and his three daughters are finding his agitation very distressing. Consider factors that may be related to Joe’s anxiety. How would you explore his agitation with him? Which other health professionals may need to be consulted?
4. Tracey, 22 years old, has just died from leukaemia. You have been nursing Tracey for the past 2 weeks in the hospice and you developed a caring relationship with her over this period. On hearing that Tracey has died, you experience a sense of loss. Reflect on your feelings. How might this experience influence your ability to nurse?
1. List three (3) major functions of a multidisciplinary palliative care team.
2. Describe how you could provide a warm, caring environment for a dying resident in an aged-care facility.
3. List five (5) physical symptoms associated with incurable illness.
4. What nursing actions could help an emaciated client whose pain is controlled but who cannot get physically comfortable in bed?
5. Describe five (5) ways you can promote a sense of wellbeing in the partner of a client who is dying in the acute-care hospital setting.
References and Recommended Reading
Berger AM, Shuster JL, Von Roenn JH. Principles and Practice of Palliative Care and Supportive Oncology. Hagerstown MD: Lippincott Williams & Wilkins, 2006.
Birks M, Chapman Y. Complementary therapies in nursing practice. In: Crisp J, Taylor C. Potter & Perry’s Fundamentals of Nursing. 3rd edn. Sydney: Elsevier; 2009:700–817.
Brown E, Jr. Supporting the Child and the Family in Paediatric Palliative Care. London: Jessica Kingsley Publishers, 2007.
Chaplin J, Mitchell D. Spiritual issues. In: Lugton J, McIntyre M. Palliative Care: The Nursing Role. 2nd edn. Edinburgh: Elsevier; 2005:169–199.
Cheraghi M, Payne S, Salsali M. Spiritual aspects of end-of-life care for Muslim patients: experiences from Iran. International Journal of Palliative Nursing. 2005;11:468–474.
Cicero JK. Waking Up Alone: Grief and Healing. Bloomington IN: Author House, 2007.
D’Avanzo C. Mosby’s Pocket Guide to Cultural Health Assessment, 4th edn. St Louis: Mosby Elsevier, 2007.
deWit S. Fundamental Concepts and Skills for Nursing, 3rd edn. St Louis: WB Saunders, 2009.
Egan G. Exercises in Helping Skills: A manual to accompany the skilled helper. A problem-management and opportunity-development approach to helping, 9th edn. Belmont CA: Brooks/Cole Cengage Learning, 2010.
Ersek M, Irving G, Botti M. Pain management. In: Brown, Edwards H. Lewis’s Medical–Surgical Nursing. 2nd edn. Sydney: Elsevier; 2008:121–152.
Foyle L, Hostad J. Innovations in Cancer and Palliative Care Education. Abingdon, Oxford: Radcliffe Publishing, 2007.
Kübler-Ross E. On Death and Dying: What the dying have to teach doctors, nurses, clergy, and their own families. New York: Scribner, 1969.
Leininger M, McFarland M. Transcultural Nursing Concepts, Theories, Research and Practice, 3rd edn. New York: McGraw-Hill, 2002.
Litwak K. Somatosensory function, pain, and headache. In: Mattson Porth C, Matfin G. Pathophysiology. 8th edn. Philadelphia: Lippincott, Williams & Wilkins; 2009:1225–1226.
Maher D, Hemming L. Understanding patient and family: holistic assessment in palliative care. British Journal of Community Nursing. 2005;10:318–322.
McLean Heitkamper M, Ross Staats C, Harrington A, et al. Palliative care. In: Brown D, Edwards H. Lewis’s Medical–Surgical Nursing. 2nd edn. Sydney: Elsevier; 2008:153–167.
Mooney D. Understanding loss, death and grieving. In: Crisp J, Taylor C. Potter & Perry’s Fundamentals of Nursing. 3rd edn. Sydney: Elsevier; 2009:498–524.
New Zealand Ministry of Health. The New Zealand Palliative Care Strategy. Online. Available: www.moh.govt.nz/moh.nsf/pagesmh/2951, 2001.
O’Connor M. Palliative care in the community. In: Kralik D, van Loon A. Community Nursing in Australia. Oxford: Blackwell Publishing, 2008.
Old JL, Swagerty D. A Practical Guide to Palliative Care. Hagerstown, MD: Lippincott, Williams & Wilkins, 2007.
Smith M. Spiritual issues. In: Lugton J, Kindlen M. Palliative Care: the nursing role. UK: Churchill Livingstone, 2002.
Stein-Parbury J. Patient and Person: interpersonal skills in nursing, 4th edn. Sydney: Elsevier, 2009.
Tiziani A. Havard’s Nursing Guide to Drugs, 8th edn. Sydney: Elsevier, 2010.
Varcarolis E, Halter M. Foundations of Psychiatric Mental Health Nursing: a clinical approach. Philadelphia: WB Saunders, 2010.
Victorian Department of Human Services. Victoria’s Palliative Care Program. Online. Available: www.health.vic.gov.au/palliativecare/index.htm, 2011.
Woodruff R. Palliative Medicine, 4th edn. Melbourne: Oxford University Press, 2004.
World Health Organization. Cancer Pain Relief and Palliative Care. Report of a WHO Expert Committee Technical Report Series No 804. WHO, Geneva. Online. Available: http://whqlibdoc.who.int/trs/WHO_TRS_804.pdf, 2008.
National Association for Loss and Grief (Australia) Inc, www.nalag.org.au/.
National Association for Loss and Grief (NZ), www.nalag.org.nz.
Palliative Care Australia, www.palliativecare.org.au/.