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Practice review

Understanding the subjective experiences and needs of patients as they approach death  

  • Comment

Acknowledging and validating the spiritual needs and experiences of patients who are dying can help nurses better support them at the end of their lives

Author

Penny Sartori, PhD, RGN, is staff nurse in the intensive therapy unit, Morriston Hospital, Swansea.

Abstract

Sartori P(2010) Understanding the subjective experiences and needs of patients as they approach death. Nursing Times; 106: 37, early online publication.

Spiritual as well as physical needs of patients should be considered when death is imminent. This article considers how nurses can best support dying patients and ensure a peaceful transition to death. Attending to patients’ spiritual needs is of the utmost importance. It also considers near death and end of life experiences that some patients may have.  

Keywords Spirituality, Death, End of life experiences

  • This article has been double-blind peer reviewed.

Practice points

  • Nurses caring for dying patients need to balance spiritual and physical needs.
  • Some dying patients may be in spiritual pain, which can be addressed through active listening.
  • Caregivers’ acknowledgment of subjective experiences can ease transition into death and give comfort to relatives.

 

Introduction

Nurses are in a unique position to administer to dying patients’ spiritual needs. However, some nurses lack experience in caring for dying patients and some lack confidence in providing spiritual support.

A number of factors need to be taken into consideration to meet patients’ spiritual needs (Sartori, 2010a; Sartori, 2010b). Daaleman et al (2008) identified three essential aspects of spiritual care at the end of life:

  • “Being present” – interacting with the patient, paying attention to emotional and social needs;
  • “Opening eyes” – becoming aware of and understanding the patient’s individualised experience of illness;
  • “Cocreating” – holistic care planning between patient, family and caregiver to maintain dignity and humanity.

These aspects of care are best achieved through getting to know the patient and building up a rapport, as patients usually open up more to nurses they know and feel comfortable with.

Where possible, it is therefore best if dying patients are cared for by nurses who have already established a relationship with them and who have an understanding of ongoing needs or any which may develop.

Balancing physical and spiritual needs at the end of life

No one should suffer as they approach death, so it is essential that patients’ physical pain is well controlled. An infusion of diamorphine or a syringe driver is often necessary to ensure relief from physical pain, respiratory distress or other symptoms.

However, not all patients will require such drugs or develop physically distressing symptoms. It is vital to consider individual needs; if physical distress develops, medication can be administered.

Although the physical aspects of patient care remain very important as a patient approaches death, it is important to consider patients’ spiritual needs as well. Caring solely for physical needs  may mean patients are deprived of the support they need while they are dying.

Spiritual needs should be considered paramount where death is imminent.

The greatest spiritual need for most patients is allowing the presence of family and, if possible, providing a quiet, private environment such as a cubicle if a patient is being cared for on a busy hospital ward.

Some hospital routines may be detrimental to and even violate patients’ spiritual needs. For example, is it necessary to disturb a dying patient every three hours for pressure area relief just to adhere to protocol, if this would cause discomfort to the patient?

Considering such a matter is not to encourage the neglect of important physical aspects, but to keep nurses mindful of their actions in relation to each individual patient (Box 1).

Box 1. Physical v spiritual needs

Sam Green* was in the end stages of cancer. He was at home, being cared for by his wife and family with the help of district nurses.

The day before he died, his pain was increasing and a syringe driver was commenced. Mr Green’s daughter, who lived in France, arrived shortly after this.

Mr Green was comfortable, conversant and very happy to see his daughter. They were able to have a brief chat, which was interrupted by the arrival of the evening district nurse team.

It was the first time this team had met Mr Green. As they attempted to reposition him, he cried out in pain as the syringe driver had not had time to take full effect.

The family suggested that Mr Green be left undisturbed as his sheets were clean, he did not have a pressure sore and was on a pressure relieving mattress.

The nurses said that they would not be able to return later and had to change Mr Green’s position. They came out of the patient’s room five minutes later and explained that they had given him a strong painkiller and “something to settle him”.

He had been given midazolam and was no longer able to communicate. His daughter did not have the opportunity to finish her conversation with her father.

Unfortunately, the nursing team  had no way of providing continuity of care and did not know Mr Green.

This was unavoidable but, had they not repositioned him, it is unlikely that he would have experienced more pain or cried out. He certainly would not have required midazolam.

He would most probably have been able to continue his conversation with his daughter, and she would not have been left with the burden of unexpressed emotions during her grieving process.

* The patient’s name has been changed

It must be emphasised that this paper does not in any way advocate withholding physical care or medication from patients who are approaching death.

What it encourages is seeing the wider picture and seeing beyond the usual ritualistic or routine care, as spiritual care is not prescriptive.

Spiritual pain

Some patients may display signs of agitation or even aggression as they approach death.

Sometimes sedation may be required, but it is important to explore other solutions prior to using this. Is there a reason for the agitation?

Patients may be in spiritual pain, which can be due to an inability to find a meaning for their existence. They may feel that their life’s purpose has not been fulfilled, or there may be fear of death, pain, loneliness, the unknown, becoming a burden, unpleasant experiences, judgement at death and death as extinction (Deeken, 2008; Penson et al, 2005).

To address spiritual pain, Elias et al (2008) developed a therapeutic intervention called Relaxation, Mental Images and Spirituality Therapy (RIME). This approach explored the transcendental aspects of the dying process, encouraging patients to reflect on the positive aspects of their life and to complete any unfinished business.

Subjective experiences of patients as they approach death

For many patients, survival of a life threatening illness can lead to a spiritual awakening and transformation (Vachon, 2008).

An aspect that is rarely acknowledged, especially in UK research journals, is the subjective experience of some patients as they approach death.

Metaphysical aspects of spirituality do not sit well within the research based scientific nursing profession. However, a number of authors have conducted research into near death experiences (NDEs) (Van Lommel, 2001; Parnia et al, 2001; Schwaninger et al, 2002; Greyson, 2003; Sartori, 2008) and end of life experiences (ELEs) (Brayne et al, 2006; Brayne et al, 2008; Fenwick et al, 2009; Fenwick and Brayne, 2010).

This research shows that subjective experiences close to death can no longer be dismissed; they can give great meaning to the patient and act as a catalyst for spiritual transformation.  

ELEs were documented as early as 1926 (Barrett). Osis and Haraldsson (1977) conducted a large cross cultural survey in the US and India. In the UK, palliative carehospice workers and nursing home healthcare workers were interviewed regarding deathbed phenomena they had witnessed (Brayne et al, 2006; Brayne et al, 2008; Fenwick et al, 2009).

As death approaches, many patients have been observed communicating with people who are not physically present. These communications are usually dismissed as hallucinations, but caregivers argue that these experiences are different from drug induced hallucinations and occur during clear consciousness (Brayne et al, 2006; Brayne et al, 2008; Fenwick et al, 2009).

While hallucinations can result in anxiety or confusion, ELEs  can resultin the acceptance of death and peace (Brayne et al, 2008).

NDEs and ELEs have previously been attributed to the administration of painkilling or sedative drugs. However, many caregivers disagree with this view (Brayne et al, 2008; Fenwick et al, 2009), and ELEs and NDEs have been shown to occur in the absence of such drugs (Sartori et al, 2006; Sartori, 2008).

In one study, strong painkilling medication appeared to contribute to unpleasant, confusing experiences and patients who had received large doses were less likely to report an NDE or ELE (Sartori, 2008).

It is therefore possible that large doses of painkilling or sedative drugs may inhibit or deny patients valid spiritual aspects of the dying process. Caregivers therefore need to bear in mind the importance of not over sedating patients as they approach death.

Types of end of life experiences

Brayne and Fenwick (2008) distinguished two types of ELEs: transpersonal ELEs and final meaning ELEs.

Transpersonal ELEs are the deathbed phenomena reported by healthcare workers and relatives who have been in the presence of dying patients. They include:

  • Seeing patients have conversations with dead family members;
  • Seeing light around the body just before death;
  • A change in temperature at the bedside of the dying patient;
  • The appearance of the dying person to a relative who is not present at the deathbed;
  • Malfunctioning of electrical equipment;
  • Clocks stopping at the time of death.

Patients may use symbolic language and talk about going on a journey or packing a case (Callanan and Kelley, 1992; Sanders, 2007) and may report having vivid dreams of dead relatives (Brayne et al, 2006).

Patients who report meeting deceased relatives, friends or pets coming to meet them with the purpose of leading them into death usually die within two to five days of the onset of such visions (Osis and Haraldsson, 1977; Fenwick et al, 2009).

Final meaning ELEs refer to the patient’s motivation to complete unfinished business and resolve complex family relationships. Sometimes a confused patient has a moment of lucidity that enables them to communicate farewells to relatives.

Shared death experience

A lesser reported phenomenon is the shared death experience (Moody, 1999).

Two separate cases of shared death experiences were reported to the author by relatives present at the deathbed of a dying person. In both cases, the family members also experienced visions and participated in part of the journey of the dying patient.

In the visions, the relatives were only allowed so far; the patient then went on alone into the light, which coincided with the time of death. The family members reported that they were left with feelings of bliss, elation and happiness at knowing that their loved one was at peace.

Acknowledging deathbed experiences

People who have witnessed or undergone deathbed experiences are often reluctant to discuss them for fear of being considered crazy or weird (Fenwick et al, 2009). Patients are more likely to report them to nurses than to doctors (Brayne et al, 2006).

Dismissal of such transcendent, spiritual experiences by those who have not experienced such a state is insulting to patients. It can be detrimental to them and could even make the dying process harder or more stressful. Patients who are met with a negative response when confiding their NDE rarely mention it again, which inhibits integration of the experience into their life (Sartori, 2008).

Nurses who observe patients having deathbed experiences could usefully share this information with other nurses by documenting it in the patient’s care plan and mentioning it on handover.

It is important to allow patients to express their ELEs and give them the validation they need by reassuring them that such experiences are common. ELEs have a healing quality (Betty, 2006), bring comfort, allow patients time to review their life and give great meaning at the end of life. Patients who experience visions usually have a peaceful transition into death (Fenwick et al, 2009).

Approximately 14% of all NDEs are frightening in nature (Box 2). Recalling the experience can evoke great emotion as, in some cases, patients believe that they have experienced hell (Sartori, 2008).

It is therefore imperative that NDEs and ELEs are taken seriously and further research is undertaken to gain greater understanding so that better psychological support can be provided in such cases.

Elias et al (2008), using their RIME intervention, discovered that when negative spiritual experiences were treated as actual experiences as opposed to hallucinations, spiritual pain was relieved.

Box 2. Negative near death experiences

As a student nurse, I cared for a dying patient who was terrified at the prospect of her impending death due to a previous negative spiritual experience.

She fiercely clung on to the uniforms and arms of all nurses, digging her nails into their skin while looking straight into their eyes and begging them not to let her die. She kept repeating that she had died before and it was a terrible experience and she did not want to go back there.

Having spoken to the family at the time and on reflection – with the benefit of having undertaken research into NDEs – I have since concluded that this patient may have experienced a negative NDE during a cardiac arrest five years previously.

At the time, however, myself and my colleagues had never heard of this type of experience.

 

Death education

Brayne et al (2008) found that nurses felt they were lacking in knowledge and understanding of ELEs. They also found that caregivers lacked support to deal with personal or professional issues arising from caring for patients who experience ELEs. Nurses felt they would have benefited from “debriefing sessions and non-judgmental support” (Brayne et al, 2008).

Many authors have highlighted the importance of incorporating all aspects of death and dying, including NDEs and ELEs, into the education of nurses (Deeken, 2008; Brayne and Fenwick, 2008; Fenwick et al, 2009; Elias et al, 2008; Sartori, 2008).

Conclusion

Nurses are in a unique and privileged position to smooth a dying patient’s transition into death.

By paying attention to what patients are trying to communicate to us in subtle ways, we can help to meet their spiritual needs and to ensure they have a peaceful death.

Whatever the belief of the caregiver, it is important not to dismiss the subjective spiritual experiences that some patients undergo. Validating these experiences can help to ease the patient’s journey to death.

Looking after a dying patient is not something that can be learned in college or from a textbook or article. Valuable insight may be gained through these means, but it is not until nurses actually care for dying patients, and observe their more experienced colleagues doing so, that they really begin to learn. Confidence increases with experience.

Having a good knowledge of ELEs can help to prepare nurses for what they may encounter in their clinical work.

 

 

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