Student's Corner

The last 48 hours of life

Denise Barham
Clinical Nurse Specialist, Oncology Day Centre, Prince of Wales Hospital, Randwick NSW

PP: 179

Abstract

This paper arose from a personal nursing reflection in which I was given the privilege of working with and nursing a patient in her last 48 hours of life.
Caring for a patient dying of cancer can, at times, be extremely difficult. Sarah was 39 years old when she died, survived by her husband and two children aged 6 and 4.
During the weeks leading up to her death, Sarah held extensive discussions with family and the multi-disciplinary team. Her goal was to live the remainder of her last few hours as comfortably as possible and to die a 'peaceful death'. Terminal care is an important phase of life, one in which individuals have the right to expect quality of care to ensure that their death occurs with dignity.
This paper provides an insight into the remaining few hours of Sarah's life discussing psychological and psychosocial support as well as management of symptoms as they arose.
Sarah practiced Buddhism on a daily basis. Issues of spirituality, serenity and peacefulness in dying were very important to her to ensure a good rebirth.
The last days of life are unique for each person. They are very personal and private. Dying people are usually less interested in the outside world and they want the closeness of only a few people – to comfort them.
I felt extremely privileged to be a part of Sarah's dying experience.

Keywords

end of life, psychosocial, symptom management, patient involvement, spirituality

Article Text

Introduction

Dying is an important phase of life, one in which individuals have the right to expect quality of life to ensure a death with dignity occurs.
On Saturday, June 12 2000 at 08:15 hours Sarah passed away. She was 39 years old and had a diagnosis of metastatic breast cancer. Sarah had lived with breast cancer for four years and had undergone surgery [modified radical mastectomy and axillary clearance], radiation and chemotherapy, all of which had controlled her disease and allowed her to live quite normally throughout those years. But, the cancer persisted and finally, no treatment options remained.
Three weeks prior to her death, Sarah was admitted to a palliative care unit to live the remainder of her life as comfortably as possible. Her goal was to die a peaceful death. At the time of admission, extensive discussions were held between herself, her family and the unit's multi-disciplinary team. Sarah prepared for her own death and expressed wishes that she hoped could be carried out in her last few days of life. Sarah elected to pursue a purely symptom oriented approach to death. The treatment goal was to manage her symptoms, as they arose, so that she could have quality time with her husband and children. It is these experiences that I would like to share with you, the reader.
Sarah was a gentle, quietly spoken, proud and independent person, who valued her intellectual abilities and physical integrity. Sarah was married to a very supportive husband and had two children aged 6 and 4. Sarah practiced Buddhism on a daily basis and often talked at length about the after life experiences she was going to encounter on her final journey on earth's plane. Sarah asked that she be allowed to be in control/charge of her death as much as possible. This was very important to her, in relation to her religious beliefs.
Sarah knew she was dying. She was not afraid to die and as death came closer, she welcomed it and longed for it. The first sign that death was near, was on the Thursday evening, June 10, when Sarah started to become short of breath, the condition known as terminal dyspnea.There was a significant increase in Sarah's respirations and her breathing became noisy and rapid. Respirations were approximately 120-140/minute. Normal respirations for an adult are 12-16/minute [Porth, 2000:600].
Initially oxygen, 2 litres, was delivered via a nasal cannula. In accordance with Sarah's wishes, this was removed when it was thought to be of no further benefit.
In the following sections of this article, I discuss physiological mechanisms, psychological support, ethical and spiritual issues that may cause barriers to ensuring 'a good death'. I recommend the development of measures/interventions to reflect/improve the effectiveness of symptom management at different points in the dying trajectory during the last 48 hours of life.

Dyspnea – symptom management

Dyspnea, an uncomfortable awareness of breathing, or shortness of breath is a common symptom at the end of life. Ahmedzai [1998] suggests it is one of the most feared symptoms and probably the most distressing to a dying patient. Breathlessness occurs when the demand for oxygen is greater than the body's ability to supply it [Regnard, 1990].
The pathophysiologic mechanisms of dyspnea are poorly understood. Under normal conditions, breathing is controlled by three components: the respiratory center, receptors that are sensitive to chemical, mechanical and cardiac stimulation and the respiratory muscles. The respiratory center is the autonomic control within the medulla that integrates peripheral and central afferent input and generates efferent activity such as respiratory rhythm. The center receives input from the cerebral cortex, which controls voluntary respiration and the periphery via mechanoreceptors and chemoreceptors [Porth, 2000:550].
When dyspnea is associated with advanced cancer, it has a wide range of causes and can result from the following: primary tumour causing airway obstruction; metastatic spread to the lung in the form of diffuse pleural or lymphatic involvement causing loss of elasticity of lung tissue; metastatic seeding or lymphatic occlusion leading to inflammatory reactions – tissue breakdown and fluid accumulation in the form of pleural effusion; respiratory muscle weakness caused through malnutrition and cachexia, seen with patients with cancer and lastly anaemia, which causes an increase in ventilatory requirements predisposing to dyspnea [Regnard, 1990].
Dyspnea is a subjective symptom that often occurs without measurable changes in pO2 [positive pressure oxygen], and pCO2 [positive pressure carbon dioxide] levels and therefore cannot be measured objectively [Ripamonti and Bruera, 1998:179-185]. The goal of management is to modulate or decrease the sensation of dyspnea.
Discussion
If the dyspnea is related to anxiety, relaxation and desensitization with guided imagery can be beneficial [Hansen-Flaschen, 1997]. With the help from her husband and Buddhism teacher, guided meditation was repeated at regular intervals to help ease the anxiety and distress that the dyspnea was causing Sarah. Candles were alight all around her room. Sarah was reminded regularly to concentrate on a candle while the meditation practices were taking place.
Sarah's husband remained by her side holding her hand and talked to her constantly in a calm soothing voice. A comforting hand and soothing voice have been shown to help relieve anxiety caused through the distressing need for air [Saita and Ripamonti, 1993].
Oxygen may provide symptomatic relief for some patients, however a stream of cold air against the face has shown to improve dyspnea at rest [Hansen-Flaschen, 1997]. A fan was placed beside Sarah's bedside and a cool stream of air was delivered gently to the side of her face. A fan often provides as much relief as nasal oxygen and does not impede bedside companionship. [Hansen-Flaschen, 1997].
Sarah preferred the cool air as opposed to the oxygen delivered via a nasal cannula. She felt the oxygen was invasive and wanted to try for non-invasive measures for comfort.
At times when the dyspnea worsened, a small dose of morphine 3mg was administered sub-cutaneously. Morphine helps reduce tachypnea and breathlessness. Low dose morphine may blunt the medullary response to carbon dioxide retention or oxygen decline, reducing dyspnea and decreasing anxiety, without producing significant respiratory depression [Merck, 1999:200]. Sarah was reluctant to have any medications because she thought they would impinge on her after-life experiences. However she did agree to have the intermittent small doses of morphine. Sarah agreed that the morphine did help with the dyspnea when it was at its worst and when she felt as if she was suffocating.
On the Friday evening, June 11, Sarah's respirations became very moist and what is known, as terminal death rattle was very prominent. By this stage, Sarah was in a semi-conscious state and was unable to swallow saliva reflexly, nor did she have the strength to cough up mucous from the trachea. Breathing with a partial loose obstruction in the central airway gives rise to noisy respiration's [Porth, 2000:600]. With the help from her family, Sarah was repositioned every two hours, to prevent pooling of secretions in her lungs. Reassurance was given and the occasional gentle oral suctioning using a soft catheter helped.
During the last few hours of life, Sarah's respirations became very shallow with periods of no breathing lasting for 5 to 30 seconds and up to a full minute. This is known as 'terminal Cheyne-stokes.' These patterns are very common and indicate a decrease in circulation in the internal organs [Porth, 2000:600].
Sarah's head was elevated with the aid of two pillows and she was placed on her side facing her husband. At 08:15 hours Saturday June 12, Sarah's breathing stilled until it became absent. Sarah had passed over, her mind, body and spirit in a peaceful state as she had wished.

Terminal dehydration/hydration – symptom management

As patients approach death, the desire to consume food and fluids diminishes. At this point, terminal dehydration or natural cessation of food and fluids becomes a major ethical dilemma. Families and care providers alike often find it difficult to withhold artificial intravenous fluids and nutrition. Many families feel that they are starving their loved one or causing undue suffering. They may experience a sense of unfaithfulness to the patient as well as guilt, frustration and lack of control over death [DeRidder and Gastmans, 1996]. A majority of caregivers/families feels that by administering fluids they are providing humane and compassionate care.
Fluids have enormous symbolic significance – they are an important part of the life cycle and are often seen as a symbol of life as well as having a huge social impact [Lamerton, 1980:100]. Although there is no evidence to indicate that fluids prolong life in dying people, a lack of fluids can allow or hasten death [Sutcliffe and Holmes, 1994]. This leads to the question of whether the symbolic significance of fluids rather than patient comfort often dictates the requirement of fluid provision in the end stage of terminal illness.
Many doctors have stated that they prescribed fluids for the dying person because they felt helpless and there was nothing else they could do. Some have expressed fears that the family may accuse health care professionals of 'acting illegally and killing' the patient. This highlights the importance of communication with the families of dying patients. Careful explanations are required to help families understand that withholding artificial hydration is not abandoning patients to their fate, but may be the appropriate treatment decision at this stage of their illness.
Most terminally ill patients experience dry mouth and thirst, but do not exhibit other severe symptoms [Burge, 1993]. In fact, terminal dehydration may lead to enhanced comfort because the decreased ability to drink may prevent fluid overload [Burge, 1993].
Doctors usually prescribe an intravenous infusion to maintain hydration in unconscious dying patients and I suspect it is to do with doctors' comfort. But, as Ellershaw [1995] points out, there is no evidence to support this. Research by Penn [1992] confirms that this is common practice to ensure the patients comfort. However, Malone [1994] states that there is increasing evidence to support the idea that dehydration may aid comfort and reduce distress in the terminally ill.
There is considerable evidence in the literature suggesting ill effects from artificial hydration in the care of dying patients. The literature states that firstly, fasting rarely causes discomfort except for occasional hunger and secondly, very few symptoms are associated with terminal dehydration except for dry mouth and mucous membranes, which can be relieved by simple measures such as frequent mouth care, ice chips and artificial saliva [Burge, 1993].
The potential benefits of terminal dehydration are as follows: the decreased ability to drink causes a fluid deficit, which leads to increased comfort by decreasing urinary output and aids in incontinence; decreased gastric secretions reduce episodes of nausea and vomiting; decreased pulmonary secretions result in decreased suctioning/death rattle; decreased pharyngeal secretions are associated with less coughing and choking; decreased peripheral fluid resulting in decreased oedema/ascites and reduction in oedematous reaction surrounding tumours result in reduced pain [Porth, 2000:600].
The disadvantages of the consequence of intravenous hydration includes: increased respiratory secretions causing cough, pulmonary congestion and sensations of choking and drowning; increased urine output causing bedwetting and requiring the use of bedpans and the possible need for urinary cathaterisation; increased gastro-intestinal secretions causing vomiting; increased total body weight increasing the incidence of oedema, ascites and pleural effusions; and decreased serum urea, causing increased awareness leading to increased distress and a decreased pain threshold [Burge, 1993].
Discussion: Ethical issues around dehydration/hydration and nutrition
During the last few days of life, Sarah was too weak and tired to drink. The question was raised whether to administer fluids by artificial means. Sarah had previously advised the health care team that she wanted no form of artificial hydration or alimentation to be undertaken and that all measures not required for comfort were to be withdrawn. End-of-life decisions that focus on withholding or withdrawing nutrition and/or hydration present difficult choices at particularly vulnerable times for patients and their families [Craig, 1994]. Sarah had read literature regarding hydration/dehydration in the dying person and had requested the latter as being more in tune with her needs. Sarah felt that dehydration is a natural consequence of irreversible disease and that artificial hydration would not be appropriate. Her main focus was on comfort and avoidance of any unnecessary complications as mentioned above. Most of all, Sarah wanted no barriers between herself and her family.
Sarah did mention a dry mouth on a few occasions, but this was relieved by the conscientious mouth care delivered by her husband. Small amounts of water were delivered by syringe into the side of her mouth every 30 to 60 minutes. A protective barrier cream was applied regularly to her lips to prevent them from becoming dry and cracked. The focus of care was totally on Sarah being comfortable rather than the controversial goal of providing optimal nutrition and hydration.
Research indicates that dehydration has physiologic effects that may relieve dying person's suffering. Conversely, artificial hydration, rather than being merciful, may do the patient more harm than good. The available evidence suggests that fluids should not be routinely administered to dying patients – nor automatically withheld from them. Instead, the burdens and benefits of artificial hydration must be weighed for each individual after careful assessment.
On admission Sarah made an informed decision with the health care team, that she not receive artificial hydration in the last few days of her life. Due to the fact that Sarah was unable to accept any oral fluids because of the symptoms she was experiencing e.g. dyspnea, diminished energy levels and a reduced level of consciousness, it was expected that Sarah would develop a fluid deficit.
As Sarah's fluid intake dropped, a decrease in circulating volume was noticeable and Sarah became dehydrated. Visible signs noticed was dry skin and mucous membranes, postural hypotension, thickened secretions and reduced tissue perfusion with cerebral hypoxia.
Reported studies have shown that the physiology of the living differs from the physiology of the dying. The electrolyte and acid-base changes associated with dehydration in the living leads us to expect:

1. hypernatremia – due to inadequate water intake to maintain serum dilution.
2. azoxemia – resulting from pre-renal renal failure.
3. acidosis – due to pre-renal acute failure, lactic acid accumulation, ketosis from starvation and hypoventilation.
4. hyperkalemia – caused by acidosis, tissue catabolism and renal failure, and
5. hypercalcemia – due to immobility, increased concentration of serum and bony metastases.

These physiologic changes are common in dehydration, but according to Ellershaw normal blood chemistries in dehydrated dying people have surprisingly been found [Ellershaw, 1995]. The most consistently seen change is azotemia with elevation of urea, creatinine and uric acid. Some symptoms seen in patients near death such as weakness, lethargy or neuromuscular irritability can not automatically be attributed to electrolyte imbalance [Porth, 2000:580]. One symptom that has been seen consistently in dehydrated terminally ill patients is a dry mouth. This may lead to cracking of oral mucosa and inflammation. As the oral surface barrier is compromised and immunity lowered, the patient may become more susceptible to candidiasis or bacterial or viral infection. This may also occur due to the use of dexamethasone.
This could be considered an ethical dilemma. It might be argued that even if dehydration doesn't cause discomfort, it might hasten death. I would argue that it is about letting the disease take its normal course, not about hastening the dehydration or the patient's death. The question must then be asked about whether or not the medical team is practicing euthanasia by allowing the patient to become dehydrated.

Anorexia/cachexia – fatigue/weakness symptom management

Cancer cachexia is a symptom that affects the physical body, yet its manifestations have an impact on the total body, mind and spirit [Krishnasamy, 1997].
Eating is both a physical pleasure and a social activity in most cultures. The ingestion of food is often associated with life and well ness. Food is often offered as a sign of hospitality [Krishnasamy, 1997]. When a patient is unable to eat or does not have the desire to eat, hope dwindles and weakness and fatigue becomes paramount [Dean, 1995].
Cachexia or 'wasting syndrome' can have a tremendous impact on quality of life [Piper, 1991:187-198]. Cachexia is a complex metabolic syndrome characterized by progressive, involuntary weight loss. Inadequate nutritional intake and malabsorption or metabolic alterations generally categorize it [Piper, 1991:187-198]. According to Mosby [1986:184] patients with carcinomatosis have alterations in carbohydrate, fat and protein metabolism. This energy consuming process contributes to an even greater increase in energy use to support the metabolic needs of the tumour, thus muscle breakdown and protein malnutrition quickly ensue. The hosts production of endogenous cytokines, particularly tumour necrosis factor, interleukin 1 and interleukin 6, in attempts to eradicate the tumour are believed to be mediators of the metabolic abnormalities in cancer cachexia [Rivadeneira, 1998:534-548].
Discussion
On admission Sarah weighed 49kg. Cachexia was noticeably evident and Sarah appeared to be in a distressed state due to fatigue. Sarah commented that her lack of energy was negatively affecting her quality of life and that she could not continue her meditation practices for more than 10 minutes at a time. The effort was causing her undue exhaustion. The fatigue was impairing Sarah's functional status, which included her mental and physical activities. Sarah was finding all this very overwhelming. Sarah felt the fatigue was distorting multiple domains of her life such as her physical, psychosocial and spiritual being. She asked for help on many occasions to be guided through her meditation practices, as these were very important to her.
There are many hypotheses relating to fatigue in-patients with advanced terminal cancer. Winningham [1995:2] suggests that fatigue has a unique relationship to other symptoms based on how the symptoms affect the individuals level of activity. Cancer patients, who become less active as a result of disease or treatment related symptoms, lose energizing metabolic resources such as oxygen and nutrients.
Piper 1991, suggests that fatigue mechanisms influence signs and symptoms of fatigue. A change in biologic patterns such as host factors, metabolites, energy substrates, disease and treatments, along with psychosocial patterns, impact on a person's perception and leads to the manifestations of fatigue. The fatigue manifestations are expressed through the person's behaviour. The clinical signs of physiologic changes related to fatigue are decreased strength, increased dyspnea and difficulty concentrating.
Quality of life is the most important goal of nutritional support of the dying. In dying patients excessive amounts of proteins and lipids may induce nausea and vomiting, due to cachexia and subsequent changes in the metabolism. Excessive hydration may give rise to oedema and dyspnea. In the late stages of dying, the patient rarely feels hungry or thirsty. The goal should therefore be to do good, not to harm and to respect the autonomy of the patient. Thus, the well-being of the patient should be in focus [Rivadenira, 1998:534-548].
The goal for Sarah was to maintain the highest possible level of functioning and quality of life for as long as she was able to. This was achieved by helping Sarah balance energy requirements with the energy on hand. These interventions helped to alleviate weariness and loss of strength related to fatigue allowing Sarah to continue with quality of life. This discussion provides a clear example of the impact fatigue has on quality of life.

Cognitive disturbances, delirium and terminal restlessness – symptom management

Delirium and terminal restlessness is experienced frequently as patients come closer to death. These 'roller coaster' symptoms can change throughout the day. The clinical picture of terminal restlessness may overlap with delirium and it has been thought that restlessness is a feature of delirium [Fainsinger, Miller and Bruera, 1991].
Very little is known about the pathogenesis of delirium, which is defined as concurrent disturbances of the level of consciousness, psychomotor behaviour, memory, thinking, attention, emotion and the sleep-wake cycle. Patients may appear agitated, hypoactive or hyperactive. It is thought the physiologic complications such as multiorgan failure, hyperhydration or hypercalcemia [due to bony metastases], are often the cause. Other causes include pain, distended bladder or faecal impaction, cerebral anoxia, dyspnea, [from hypoxemia, secretions, pulmonary oedema], and the inability to move. The confusion may worsen at night or with the administration of sedatives and this can also occur with the use of benzodiazepines [Brant, 1998:20-22].
Discussion
Sarah became very restless during the early hours of Saturday morning. Up until this stage she had been still and had only been lucid for about an hour on the Friday evening. She started having hallucinations/visions and would toss and turn whilst moaning, pluck at her sheets and sometimes reach out to someone or something in the air. Sarah's husband remained by her side, holding her hand and providing quiet verbal and tactile reassurance. He told her on a few occasion's that it was "okay to go now'. The family believed that due to Sarah's kindness and compassion during her life, she was experiencing blissful heavenly visions and was meeting loving friends and enlightened beings who had already passed/died before her.

Promotion of comfort and relief of pain

Nursing has been defined as the assessment and management of human responses to actual or potential health problems [Burkhardt, 1989]. When the patient is in the terminal stage of life when cure or prolongation of life in individuals with serious health problems is no longer possible, the focus of nursing is on the individual response to dying. Assessment and management then focuses on the promotion of comfort, which becomes the primary goal of nursing care [Amentia and Bohnet, 1986:80]. One of the major concerns of dying patients and their families is the fear of intractable pain during the dying process. Indeed, overwhelming pain can cause sleeplessness, loss of morale, fatigue, irritability, restlessness, withdrawal and other serious problems for the dying patient [Melzack, 1990].
Nurses have an extensive role in the assessment of symptoms and the control of pain in dying patients because they often have the most frequent and continuous patient contact. In planning nursing care of dying patients, "the patient has a right to have pain recognized as a problem and pain relief perceived by the health care team as a need" [Schmitt, Spross and McGuire, 1990]. The assessment and management of pain should be based on a thorough understanding of the individual patient's personality, culture and ethnicity, coping style and emotional, physical, and spiritual needs and on an understanding of the pathophysiology of the disease state [Dalton and Fenerstein, 1988]. Pain is a subjective experience and is what the patient says it is [WHO, 1990].
Discussion
The main goal of nursing intervention for dying patients should be maximising comfort through adequate management of pain and discomfort, as this is consistent with the expressed desires of the patient.
Sarah had been taking prescribed morphine 10mg on a regular 4 hourly basis for the metastatic bone pain. Due to her wishes, the dose remained unchanged during the last 48 hours of her life. Sarah had politely refused any drugs, which would interfere with her awareness. She had felt that by increasing the dosage of analgesic to overcome activity related pain would lead to undesirable sedation.
At times when Sarah was repositioned, she would moan or cry out, even when she appeared deeply unconscious. Once moved, she would resettle into a comfortable state. Before movement took place, Sarah was informed of intended intervention. Sarah was always repositioned using a gentle, slow handling movement.
Sarah's wishes were respected and the outcome placed a high priority on her management of care. Sarah's wishes were clearly delineated regarding symptom management during all phases of her dying trajectory. Sarah received optimal management whilst preserving her cognitive function. Qualities of remaining life goals were achieved.

Terminal sedation

Terminal sedation is the use of high doses of sedatives to relieve extremes of physical distress. When applied to patients, who have no substantial prospect of recovery, terminal sedation refers to a similar last resort clinical response to extreme, unrelieved physical suffering. The purpose of the medications is to render the patient unconscious to relieve suffering and/or to reduce their perception of their experience, not to intentionally end their life [Frank, 1991:90].
Measures such as artificial nutrition, hydration and other life prolonging interventions are usually withheld during terminal sedation because they could prolong the dying process without contributing to the quality of the patients remaining life.
Discussion
In the context of end-of-life care, the component practices of intensive symptom management and withholding life-sustaining treatment have widespread ethical and legal support. However, because death is a foreseeable, inevitable outcome of the aggregated circumstances of the patient's condition and interventions, the act can be more morally complex and ambiguous than is often acknowledged.
Terminal sedation should be distinguished from the common occurrence of a dying patient gradually slipping into an obtunded state as death approaches; this occurrence is a combination of the metabolic changes of dying and the result of usual palliative treatments.
Terminal sedation is also distinct from the sedation that occasionally occurs as an unintended side effect of high-dose opioid therapy, which is used to relieve severe terminal pain. In contrast, terminal sedation involved an explicit decision to render the patient unconscious to prevent or respond to otherwise unreliable physical distress. The main indication for terminal sedation is usually severe, uncontrolled physical suffering, such as intractable pain, dyspnea, seizures or delirium [Brant, 1998].
In response to Sarah's decision to withhold treatment, the clinical course and symptoms that she may experience were discussed with her and with her family. Sarah had agreed to use medication for sedation if her suffering became intolerable during the dying process. Most of all she wanted to be comfortable and did not wish to cause any more suffering or distress, or becomes a burden to her family.
However, sedation did not become an issue. Whilst using meditation, Sarah was uniting her mind with the Buddha and the state of her mind needed to be pure. In Buddhism the moment of death is believed to be an exceptionally powerful opportunity for purifying karma.
Sarah's whole attitude to the moment of death was:

Now when the bardo of dying dawns upon me,
I will abandon all grasping, yearning and attachment,
Enter undistracted into clear awareness of the teaching,
And eject my consciousness into the space of unborn Rigpa,
As I leave this compound body of flesh and blood,
I will know it to be a transitory illusion.
[Sogyal Rinpoche, 1992:180-190]

Spirituality

The spiritual needs of dying patients seem to be the least understood [McNamara, 2001:58]. In western thought and experience, theism is important in people's capacity to face adversity without despair [Garrett, 2001]. The essence of spiritual care is recognising and affirming the value of the individual and their personal beliefs and feelings, hopes and fears [Piles, 1991]. It also involves being able to separate spirituality from a religious framework.
As cited by Sanders, 2002 Narayansamy 1999 suggests that each individual is capable of actualizing a unique potential i.e. the spiritual component of their being, during times of emotional stress, physical distress or death. Whereas, Twerski 1997 points out that the spiritual life of an individual includes the ability of the person to be responsible, to be trusting, to achieve deeper levels of intimacy and to realize their potential for growth. What constitutes our spirit is our ability to contemplate the purpose of our existence, ways to better ourselves, to delay our gratification and to think about the long-term consequences of our actions. According to this view it is the spirit that enhances the individual capacity to make moral decisions. Twerski 1997 also feels that it is possible to be spiritual without being religious, since there appears to be no innate human imperative to practice religion. [This is debatable of course].
Alexander 1997 quotes the Buddhist monk, Thich Nhat Hanh in his description of mindfulness [spirituality] as 'keeping our appointment with life'.
Traditionally, the word 'spiritual' has been interchanged with 'religion', with most people believing that either one referred primarily to religious beliefs and practices. Religion is a belief system that enables people to conceptualise and express their spirituality. It is a construct of human making where those who profess the faith carry out practices [e.g. meditation, prayer, reading of sacred texts etc].
Spirituality is a broader concept than religion. It may not incorporate religious rituals and behaviours and does not necessarily involve participation in a religious organisation [Mount, 1993].
Mount [1993], defines spirit as 'being or intelligence, conceived of as independent of anything physical or material – the soul of the person', and that spirituality is the essence of what it is to be human.
Spirituality is an integral aspect of life, health and well being. Holistic health is based on the assumption that the mind, body and spirit are interdependent and spirituality is an aspect of the total person that influences as well as acts in conjunction with other aspects of the person.
The word 'spirit' comes from a Latin word spiritus, which means the breath of life that is given from outside us [Walsh, 1994:100]. The person is an empty shell without the spirit, meaning that the human spirit is the energy within each person that searches for a meaning and a purpose to life. Spirituality is the need to feel connected to God or a higher power. It instills hope that extends beyond the grave and beyond life itself [Burkhardt, 1989].
Discussion
In Buddhism, the actual experience of death is very important especially in the Tibetan form of Buddhism, which Sarah practiced. Sarah viewed death as a normal process, a reality that she accepted would occur as long as she remained on this earthly existence.
According to the wisdom of Buddha, we can actually use our lives to prepare for death. Sarah had managed to cultivate a happy peaceful life. This was very important to her, as she believed it would cultivate a peaceful death.
In the Buddhist approach, life and death are seen as one whole, where death is the beginning of another chapter of life. Death is a mirror in which the entire meaning of life is reflected [Sogyal Rinpoche, 1992:80-100].
Buddhism holds that there is a cycle of reincarnation and that life is a result of Yin [previous deed] and Yuan [chance of nature] [Sogyal Rinpoche, 1992:30-50].
Sarah believed that how she would be reborn was dependent on karmic forces, her state of mind at the time of death, as this would influence the quality of her next rebirth. It is believed in Buddhism that good deeds and a clear conscience make peace for the dying. Death means a new cycle of reincarnation with reward for the good. This explains Sarah's reluctance to accept morphine.
In Tibetan Buddhism a good death is regarded as passing away in the presence of family members with no unfulfilled family responsibility, with pain well controlled and with a clear conscience [Sogyal Rinpoche, 1992:30-50]. Hence, Sarah's husband remained by her side, in the last 48 hours of her life, to support her in her time of need to ensure she had a good rebirth.
Sarah's husband remained by her side telling her to 'let peace work on you.' He encouraged her to gather her scattered mind into the mindfulness of calm abiding and awaken in herself the awareness and insight of clear seeing. As Sogyal Rinpoche writes: "You will then find all your negativity disarmed, your aggression dissolved and your confusion evaporating slowly." He constantly reminded her to let thoughts and emotions, whatever rises come and go, without clinging to anything.
Mr. Lin, Sarah's husband and Buddhism teacher, told Sarah during moments of confusion and delirium that the mind is like a candle flame, unstable, flickering, constantly changing, fanned by the violent winds of your thoughts and emotions. The flame will only burn steadily when you can calm the air around it, so you can only begin to glimpse and rest in the nature of mind when you have stilled the turbulence of your thoughts and emotions. This had a remarkably calming effect on Sarah.
Mr. Lin aided and guided Sarah through meditation practices to bring the mind into a state of calm, so that she could rest in natural great peace. In Buddhism, meditation is the road to enlightenment and the greatest endeavour of life [Sogyal Rinpoche, 1992:30-50].
Spirituality to Sarah and her family was considered to be the highest value in life.
The last days of life are unique for each person. They are very personal and private. Dying people are usually less interested in the outside world and they want the closeness of only a few people – to comfort them.
I felt extremely privileged to be a part of Sarah's dying experience and hope you will also feel extremely privileged to read the account of Sarah's journey. I am sure Sarah valued my empathy, skilled care and support – a treasured experience though so sad.

Conclusion

The last few days of a person's life can be very difficult and may be viewed with apprehension. If members of the family have never seen anyone die or have never seen a dead person they may be afraid of what will happen. It is essential to ensure the patient dies a 'good death' and with dignity by helping the patient and family understand and preparing them for anticipated symptoms that indicate that death is approaching.
On Thursday morning, June 10, Sarah stopped eating and drinking. She accepted the occasional sip of water but absolutely nothing else orally. There was a decreased need for food and fluid due to her body's metabolism slowing down. She appeared physically comfortable and wanted the last few days of her life to be personally meaningful.
Sarah's family shared stories, cried together, listened to music, meditated, lit candles and prayed and chanted together. Incense burned and a photograph of her enlightened master was placed at her side. The room was transformed from something ordinary into an intimate sacred space.
Morphine 10mg administered sub-cutaneously controlled her pain without causing sedation. Her mouth was kept moist with ice chips and swabs, but she was careful not to swallow any of the liquid.
During Thursday and up until Friday evening Sarah spent more and more time sleeping and at times was difficult to rouse. Increased sleeping is a result of a change in the body's metabolism. Semi-unconsciousness or unconsciousness may occur. On Friday June 11, Sarah became confused and agitated and began having hallucinations. It was noted that Sarah had become increasingly confused about time, where she was and the identity of family and friends. Sarah's husband sat by her side holding onto her hand, offering undivided love, attention and reassurance. Talking in a calm manner, touch and companionship helps to comfort as well as lessen confusion in dying patients. After discussions with the family, it was decided to withhold sedation. Due to the hallucinations Sarah was experiencing, the family felt that Sarah was making important spiritual connections.
Her breathing became irregular, often with long periods without her taking a breath. This continued until her breathing stilled and became absent. Sarah had died quietly at approximately 08:15 hours Saturday morning June 12 surrounded by her family and teacher of Buddhism.
Sarah's family had remained resolute in their support for her decisions and firmly committed to keeping her comfortable. However, they did have some emotional family discussions and at times struggled with whether they had done too little or too much to help her die peacefully. They drew comfort from recognising that they had kept Sarah's values in the forefront and made the best of a potentially devastating situation.
Sarah's death was an inspiration to us all. She died with such grace and dignity, and everyone who came in contact with her felt her strength.
Sarah remained in command of the situation, right up to the end and her trust in the teachings of Buddhism seemed never to waver.
Up until the time she became unconsciousness, Sarah was consistently cheerful, confident and humorous, having a dignity about her, which arose from her courage and self-reliance.
I felt honoured and privileged to be with Sarah in her last few days of life. I will never forget her and sharing her dying experience, has brought so much to my life. Thank you.

Acknowledgement

I would like to thank Fiona Farmer and Paul McDonald, two of my tutors from the oncology post graduate course at the NSW College of Nursing. For inspiring me to go ahead and have this article published and helping make a dream become a reality. I also give great thanks to Sarah and her family for allowing me to share in their journey and experiences.

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