Palliative care is patient centred, death accepting, a relationship between the patient and the carers, concerned with healing rather than curing. Healing is about the right relationship with self, others, environment and god.
Palliative care is concerned with patients quality of life, helping them reach their potential physically, psychologically, socially and spiritually, however ill they may be.
Palliative care is best managed by a group of people working as a team interested with the total well being of patient and family. Co-ordination and communication is an important part of teamwork.
Effective communication is the key to a therapeutic relationship (Edwards, 2001). Skills such as active listening, reflecting and using open and closed questions to obtain information sensitively, will ensure not only effective assessment and evaluation, but also palliative care as a whole (McEvoy, 2000). Problems with communication can make palliative care hard for patients, family, carers and professional care teams. Furthermore, interpreters do not always solve communication problems. Many care teams depend on family members to assist them interpret. Good communication requires a common understanding of religion and culture and the capability of a interpreter to understand a way of life (Randhawa et al,2003)
The World Health Organization (WHO) believes that palliative care is compassionate care of patients when curing or prolonging life isn’t attainable. Palliative care involves effective pain relief; psychological and spiritual care of the patient with the intention of improving self-esteem regardless of poor physical ability; working with the family, friends and carers to create a support network to help patients cope and remain autonomous and to live as happy and actively as possible until death; support for the family during the patient’s illness and in bereavement.
PAIN MANAGEMENT AND COMFORT PROMOTION
Alleviation of pain and symptoms
Pain relief is an extremely important element of palliative care. (Simon , 2009). Accurate and comprehensive pain assessment is essential to providing effective pain management. Assessment that focuses on pain alone misses the other interrelated symptoms (Hemming and Maher, The nurse needs to set goals which are realistic. The nurse must monitor pain repeatedly and must not wait for the patient to complain of pain. Reassessment is also necessary as a patients condition and pain change with time. Brant(2003)states that inadequate assessment is a major problem in effective pain management.
The World Health Organization (WHO)(1990) guidelines on cancer pain management stress the main principle is to choose the right drug treatment in accordance with pain severity, not the disease stage.
Pain relief needs to be administered regularly to keep a constant therapeutic dose in the blood, or else peaks and troughs take place which cause suffering to the patient and unpleasant effects on their quality of life (Hemming and Maher, )
Pain and other symptoms are frequently not managed well enough, and continue to be a cause of anxiety for patients and their families(Fallon et al, 2006). suitable and sufficient pain relief should be provided. Clarke (2006) stress the importance of giving the patient effective pain relief as well as pain information, and involving patients in their pain management which help to reducing suffering. Some Hindus may request to avoid opiate pain relief, as they may believe it will decrease their ability to meditate or see unwanted visions (Wilkins and Mailoo.
Existential distress is the term given to difficulties patients have in making sense of their life, particularly when facing pending death. ( Mok et al, 2010). numerous palliative physicians and pain specialists are aware that there is a link between existential suffering and pain (Strang et al.2004). If they are not addressed, they will both delay recovery and add to the overall suffering of the patient (Mako et al. 2006). Nurses, who have frequent contact with patients, are in a position to deal with the matter as part of holistic care. To solve the problem nurses need to involve the patient, carers and family. It also requires healthcare professionals’ sensitivity and genuine involvement in the care of the patient.
Mr Chauhan has undergone stoma surgery in 2008 and faced several adjustments as a result of alteration in body image. The nurse caring for Mr Chauhan needs to be aware that as he is from an ethnic minority, the psychological and psychosocial effects of a stoma can have a huge impact on the cultural and religious aspects of their lives (Black, 2000)
The caring of patients who speak no English has ethical, legal and professional implications for patients, relatives and health care staff. Appropriate communication between patient and the health care team demonstrates respect, and empowers the patient to make health care decisions (Black, 2008).
CULTURALLY AND SPIRITUALLY APPROPRIATE CARE
Hindus believe that, life is not as much about worshipping God and more about living a good life that will bring the individual closer to God. Hindus prefer to die at home. Home has a religious meaning and death outside the home can cause distress. A Hindu priest reads from the holy books and carries out holy rites which include tying a thread around the wrist or neck, sprinkling the patient with water from the Ganges or placing a sacred tulsi leaf in the patients mouth. Hindus believe that the body should be returned to nature therefore the dead body is cremated . A dying hindu patient may request to be laid on the floor during the final moments of death.
Last offices – Normally, it is only those of the hindu religion who touch the body and the family wash and prepare the body in the home. (Nazarko, 2006).
There may be strict religious beliefs, strong cultural heritage, or the patient may have fled from torture and terror. Some patients with a stoma view it as a punishment or of confirmation as a wrongdoing in a previous life (Black and Stuchfield, 2005)
For those with a stoma, arrangements for ritual cleansing before prayer should be discussed and appropriate stoma products should be used. If the nurse is unsure about the care and ritual of a patient they should ask the patient what their needs and expectations are. If unsure, talk to with the appropriate religious leader and seek advice (Black, 2008).
Retired Hindu parents hand over their responsibilities to their children. It is usually the duty the eldest son and his family to care for their parents (Wilkins and Mailoo, 2010). Devoted Hindu people pray numerous times daily; as early as 4:30am to as late as 9:30pm (ISKCon, 2009).
The nurse should provide a place of prayer for Mr Chauhan which should be away from unclean facilities such as toilets, and if possible in the north-east side of the room. (Sahasrabudhe and Mahatm, 2000).
Modesty issues are extremely important for Hindu people and they usually prefer same-sex staff for care of personal and hygiene needs. All those providing care for Mr Chauhan should respect Hindu beliefs as regards to touch when helping with with mobility, dressing and self-care (Wilkins and Mailoo, 2010)
Hindus are very clean and prefer to be washed in running water. Many Hindus flush their nostrils with warm saline solution and some clean their tongues before meals. Nasal flushing is best given up if residents are no longer able to do it with assistance, because it may be unpleasant to receive passively. The right hand is customarily used for eating, and the left for toileting therefore the nurses involved in Mr Chauhans care should be aware of this when giving food, as the use of the left hand may cause offense. Many hindus wash themselves with water after using the toilet therefore Mr Chauhan may need a bowl of water or a shower after toileting (Wilkins and Mailoo, 2010).
Thoughts at the time of death are believed to establish a patient’s reincarnation, therefore it is essential to let Hindus, and their families, know when they are dying. Hindus may request to hear mantras, see particular images or be in a specific place at the time of death (Holland and Hogg, 2001). The Hindu person may ask for the presence of a priest or family members. Alternatively, it could be a dying wish to be left in peace to centre their mind on spiritual thoughts A dying Hindu person may wish to lie on the floor to be closer to the Earth, and have their head facing east. They may also make a sacrifice by giving money to charity. Although facilitating these traditions could be interpreted as malpractice in the west. A natural, dignified death may be preferred to unnaturally prolonged life. Death carries over into the next life. Health and social care staff must discuss spiritual needs with Hindu patients on an individual basis to ensure quality of care. (Wilkins and Mailoo, 2010).
Caring for a dying patient in the community during the last few weeks or months of life requires an extraordinary commitment from the nursing team, not only in terms of human resource, but also in terms of capability, empathy and clarity of focus in caring for the needs of the patient, family and carers. Gold Standard Framework; communication, co-ordination, control of symptoms, continuity, continued learning, carer support and care of the dying( Melvin, 2003).
Health care professionals are starting to be aware of the values, beliefs and practices of other cultures and faiths in order to provide culturally appropriate care (Black, 2008)
In cancer and palliative care, it is evident that practitioners do not feel their training is sufficient in preparing them to care for the needs of those from diverse ethnic and cultural backgrounds ( Gunaratnam, 2007).
FAMILY EDUCATION NECESSARY FOR THE RECOGNITION OF IMPENDING DEATH AND DEATH
The role of the nurse is to understand how the individual with a cancer is affecting his or her family and, in turn, how family reactions and behaviours influence the patient’s experience. Furthermore, the goal of family care is to assess what can be done to strengthen the support available to them throughout stressful periods. Its important as the patient approaches death to find out what support is needed to meet the patients’s spiritual and cultural needs. The patient’s preferences should be well-known before death, if possible. If the person is too ill to state their final wishes, family and friends may be able to provide the appropriate information. Spiritual needs are often part of the person’s culture and its important to understand how culture affects expectations and behaviour in the person’s last days of life. (Nazarko, 2006).
emotional, physical and social stress; many of the carers felt that they needed respite from the physical and emotional burdens of caring, as well as time to relax and socialize with friends(Scot, 2001).
For carers of people with complex and changing palliative care needs, coping with change, doubt and uncertainty can be a daily struggle.
Palliative care nurses, the research team noted that professionals commonly choose to relate to one key carer, preferably the next of kin, who are first and foremost given information about the patient, regarding their health. Nurses can feel anxious and uncomfortable in the presence of a large family,as some may have different information needs and may not respond well to the information given (Scot, 2001)
Patients and carers constantly criticise the lack of information given to them.
Good, clear information helps in reducing anxiety, giving a sense of knowing, and regaining a sense of control. Patients do not always hear things the first time, so doctors need to be patient, being prepared to give information in bits, repeating messages, and checking in later to confirm that it was understood. Printed ‘fact sheets’ and diagrams can be useful, as can referral to disease-specific community groups or websites.
Ensuring that the person’s needs are met during and beyond death is an important aspect of caring and the contribution of nursing staff is invaluable.