Introduction
Patients and their family members, at the terminal hours of their life (Twycross 6), expect care as better as possible and express some common desires, attitudes and, mental and physical manifestations that are closely related to their social and spiritual variables (Pompei and John 112). The change in the geographical milieu has changed also end-of-life care from time to time (Byock 760). Sudden death and death at a young age have always been unexpected (Gordon 354).
But in the past, there was an intention to die after a short illness. It was common that the patients would breathe their last at home. But the scenario started to change over the last 50 years or so when medical science began to progress rapidly 1960s with the initiation of bacteriology assisted by the inventions of modern technology. People began to expect longevity with the help of modern medical science.
As it is stated by Chan “over the last 50 years, more and more people are living longer, but with chronic illnesses causing gradual deterioration” (2). People began to depend on the institutional health care system more and more. “More are spending their last months in institutional care” (Chan 2). Consequently, the end of life care developed as a separate branch of study. Successful management and care of pain at the end of life requires a holistic approach including the physical, social, psychological, spiritual viewpoint of both the carers and the patient (Arnold 11-31). It requires an all-embracing “understanding of pain control strategies” (Wong On-Nin John., et. al. 283).
Understanding the nature of pain and the adoption of the palliative approach to the pain is crucial to its success. At the end of life, patients undergo physical and mental weakness, immobility, mortification of taste and, mental and physical bereavement. Indeed at this stage, the patient’s condition may deteriorate suddenly and unexpectedly. The deterioration of the patients’ status eventually is assisted by various levels of stress, anxiety, and emotional outburst of the patients, their family, and the carers.
Control of symptoms including management of pain and agitation, and mental support from the family members get priority. Effective medical teams should adopt the approaches the health-care of the patient strategically. The slogan of ‘freedom from pain’ stated in the World Health Organization Document “Freedom from pain should be seen as the right of every cancer patient and access to pain therapy as a measure of respect for this right” (Bistros 4).
Assessment of Symptom and Care of Patient
The goals of the end of life care are to be determined by the nature and assessment of the end of life by the patients’ attitude and the carers’ viewpoint. It is generally designed to attain dignity for the dying patients and to ensure the psycho-physical comfort as required in regard to place of care, spiritual and emotional needs. When a patient deserves the end of life care depends on the deterioration of the patient’s condition. The dying condition of a patient can be perceived by the steady deterioration over days to weeks.
The patient seems to be very weak and feels continual drowsiness. Almost in every case of an aged patient becomes mentally disoriented and in case of death at a young age, the patient becomes mentally disordered and bereaved. Certain other physical symptoms may assist these symptoms, such as difficulty in swallowing, abnormal breathing patterns, etc. In this regard, the example of Ann can be taken into concern. Ann who is a patient with vaginal cancer was admitted for symptom control. She was admitted on Saturday,…………………08:15 hours. Ann passed away on……….2005. She was admitted for symptom control (Quibell and Baker 207).
She was suffering from leg pain for three months. The pain was off the neuropathic type initially. She was on oral morphine on the regular side plus PRN subcutaneous with no effect. Her management of symptoms started on Syringe driver initially with morphine but later it converted to diamorphine to oxycodone with effect at the last 48 hours of life. Ann lived with vaginal cancer for four years. She had undergone several surgeries. Radiation and chemotherapy and several other treatment options controlled her disease and helped her to live normally. But finally, cancer persisted and led her to death.
Ann’s goal was to die peacefully. When she was admitted, communicative discussions were held between Ann, her family members, and the medical care team. Ann was agitated about her oncoming death. But she was managed to prepare herself for her death by successful end-of-life care. She expressed her wishes to pursue a purely symptom-oriented approach to death (Barham). The goal of the medical care unit was to manage her symptoms in a palliative way. Indeed she chose such a way so that she could carry on being a mother and a partner as best as she could. The following Principles of managing her last 48 hours are taken as below:
Problem Solving Approach to Symptom Control
The problem-solving approach is crucial for the management of pain at the last 48 hours of the life of the patients. At this stage, the problems are uncertain and unpredictable. Very often instant change is required to cope with the situation of the patients. Physicians will cover and at the same time keep an eye on the “unique needs and circumstances of patients from various ethnic, religious, and cultural backgrounds when they plan to develop a plan of pain management” (Bitros 5).
The overall idea of cost management and the capability of the patient to bear it will determine the whole management of end-of-life care. “Knowledge of costs and side effects of proposed therapies are also important considerations” (Bitros 6). Health carers will not have a wrong notion that the pain of the aged patients is just because of being old. Elderly patients should be considered at high risk for undertreatment because many healthcare providers believe that pain is just a part of growing old (Bitros 4).
Review All Drugs and Symptoms Regularly
The physician should stop all non-essential drugs e.g. anti-hypertensives, vitamins, laxatives. A palliative approach is to be adopted. High-dose opioids are strongly recommended. After all, the route of administration should be selected to cope with the condition. In such case, if the patient is unable to swallow, PR or subcutaneous route is preferred. IM is to be avoided.
Maintain Effective Communication
If the communication is maintained effectively between the patients and the carers and the patients’ relatives, it is easy to avoid unexpected outcomes. Continuous monitoring of the patients’ condition is to be established so that instant steps can be taken. The cancer care team or the health carers will maintain effective communication with the patient in order to ensure that the patient’s goals are being fulfilled. In an article of National Comprehensive Cancer Network entitled “Treatment Guidelines for Patients,” it is said,
“If the care is satisfactory, the doctors will an ongoing evaluation and communication between the patient and the cancer care team. If the care is not satisfactory, it will be changed” (American Cancer Society 57). The health carers put an effort to communicate with the patient and his or her family members about palliative care options. The mental health professionals will be engaged in the case of the patient’s mental depression. Ann had two sons. One of them is deaf and the other was slightly mentally handicapped. When Ann was admitted she and her family members were made aware of the diagnosis and of the disease as a part of palliative communication with the help of staff they accept and understand their mom’s condition.
Ensure Support for Family and Carers
Support, from the family and the carers, is necessary to maintain an environment helpful to the patient. To avoid unexpected protests from the family members the physicians should explain what is happening. For example, if the breathing of the patients is not regular, they should be assured that the patient is not ‘breathless’. The family members should be encouraged to be involved in talking to the patient (Medtronic Pain Theatre para 4). Also, they should be encouraged to do tasks of simple caring, to touch the patient comfortably.
The end-of-life palliative care for a patient should include support and sympathy of the patients’ family members, friends, and relatives. Also, the patient needs religious support, spiritual support, and from his cultural norms. The expert health carer must ensure that a safe home environment for the patient. The support of the health carers for the patient must be more than that of a professional one. He or she (the caretaker) must ensure that he is available to help the patient. Financial condition plays a significant role in the end-of-life care of the patient. So it is necessary, as it is said in an article, that:
“Financial resources will be identified and social services will be asked to help with pulling together the resources need by the patient.”
The health carer is assigned a greater responsibility. He must have the professional training to undergo the pressure and the stress that emerge at the final hours of a patient. He must have the psychological preparation to face the abrupt bereavement of the patient’s family members. The palliative end-of-life care must identify the barriers created by the patient’s belief, culture, and custom and the cancer care team will take steps accordingly.
In the case of Ann, she was afraid of being detached from her child. As a result, her sons were convinced by the medical team to stay with her day and night. It was difficult for the poor children to assist Ann all the time. However, she was sedated the children were provided relaxation. During the terminal moments, the patient and her children became quite emotional. To check the emotion they gave information to the sons but it was not the truth. The elder of Ann’s children had a good chatty relationship with the staff in the earlier days in the hospital. But when her pain became uncontrolled, and she became agitated, he got very angry with the staff. In order to manage him, the staff & doctors talk to him and explained.
Religious, Cultural Considerations, and Attitude to Death
Religion and cultural norms play a significant role in the end-of-life care of a dying patient. Spiritual needs are something that ensures psychological comfort for dying patients. McNamara shows that “[t]he spiritual needs of dying patients seem to be the least understood (58). Spiritualism very often is proved to be the catharsis to despair. “Theism is important in people’s capacity to face adversity without despair” (Garrett).
A holistic palliative approach must include the spiritual care provided by the family members and the health carers. Every individual has the capability of bearing the emotional stress and physical distress with the help of both religion and his spirituality. The spiritual components attached with the individual being of the patient and his family members, help them to take the oncoming death easily. A patient influenced by his religion may believe perpetually he is suffering because of his past sins. In this regard, “[a]ll healthcare professionals must recognize uncontrolled pain as a contributing factor to feelings of hopelessness, suicidal ideation, and, at the extreme, requests for physician-assisted suicide or euthanasia” (Bitros 4). The cultural background of a patient must be considered by the physician (Jones 304).
The health care practices, belief of illness, and behavioural change during the illness of the patient are influenced by the culture of the patients. As Bitros says, “[s]everal societal worlds interact when assessing and managing pain, including cultural backgrounds of both patient and clinician…….Awareness of and sensitivity to cultural issues is key to providing effective pain management to people with cancer (4)”
A motherly affection dominated Ann’s nature that agitated her frequently with the thought of her children’s future. Her religiosity managed to pacify her. She was helped to accept her fate normally. Ann was Christian in her belief. Very often she spoke of the after life doctrine. For Ann this life is a temporary one and she is going to face her final journey in the after life. Ann knew that she was going to die. She was not afraid of her oncoming death and as death came closer, she became more welcoming to it and longed for it.
Symptom Control
Depending on the clinical finding an analytical approach is to be taken for symptom control. The approach includes all the causes of terminal illness and can be applied to care both at home and health care institution. The approach at this stage is palliative in all regards. Pain, spiritual and mental, is to be pacified first by the palliative approach. An effective pain management for a patient at the end of life is a challenge for the palliative approach to the symptom control of advanced disease with progressive illness. Palliative approach to the management of pain requires a close study of the cause of pain whether it mental or physical. According to KARL E. MILLER,
“It is also important to determine if the pain is nociceptive (somatic or visceral pain) or neuropathic (continuous dysesthesias or chronic lancinating or paroxysmal pain)” (Miller & Monica).
Drugs are to be proved according to the situational needs and route of administration. In the management of pain of a patient the WHO’s guidelines has been proved to be 80% effective by the use of analgesic drugs. Primarily the cause and nature of the pain is to be identified. The patients’ and their family members’ confirmation can be used to assess the causes of pain whether they are benign or malignant. There may be several types of pain syndromes.
They are somatic or visceral or neuropathic, that involves continuous dysesthesias or chronic lancinating or paroxysmal pain. The correct identification of pain syndrome is necessary for the physician to maintain a better pain management. The management of pain mainly pivots on the patients’ instant health status. Treatment should be maintained accordingly with the change of conditions.
“Acute episodes of pain are dealt with urgently in the same analytical fashion but require more frequent review and provision of appropriate “breakthrough” analgesia” (Adam). Corticosteroids and non-steroidal anti inflammatory drugs can be used to control Nociceptive pain but neuropathic pain can effectively be reduced by tricycle antidepressants or anticonvulsants. But drugs should be selected according to the nature of pain and the characteristics of the drug. The situation may lead to replace the antihypertensive, corticosteroids, antidepressants, and hypoglycaemic drugs with anathematic, sedative, and anticonvulsant drugs.
When oral administration is not possible to be maintained, Jim Adam suggests the subcutaneous route. It allows a simple and effective alternative. Diamorphine is considered to be the strong opioid. It is quickly soluble and can be “delivered through a syringe driver device to avoid repeated injections every four hours” (Adam). Some experts also instruct to mix it with other “essential” drugs. When oral administration is not possible, rectal administration can be applied as another alternative. In regard to the use of alternative route of administration, what Jim Adam suggests, is as following:
“The route of administration depends on the clinical situation and characteristics of the drugs used. Some patients manage to take oral drugs until near to death, but many require an alternative route”(Adam).
If the breakthrough pain is relieved of, the administration of analgesic medication may be required. An equianalgesic dose chart can be used to change the route of administration, if one analgesic medication is not effective to reduce the pain. KARL E. MILLER suggests the opioid rotation in case of the dispersive promulgation of pain from one specific regimen. A patient may already be under the medication of one type of analgesia, it may be continued all through the end. If the pain agent continues to create the malfunction, “pain may disturb an unconscious patient.” As it is stated in the following line of Miller & Monica,
“If a significant amount of medication for breakthrough pain is already being given, the baseline dose of sustained-release analgesic medication should be increased”.
Both KARL E. MILLER and Jim Adam put priority on the psycho-social and spiritual issues to be addressed. “The impact of unresolved psychosocial or spiritual issues on pain management may need to be addressed” (Miller & Monica and Adam). Depending on the information from the patient himself or herself, the family members and the carers, the medication for the patients can be changed. Regular medical review also can be considered to monitor the “level of symptom control and side effects” (Adam). There should be a survey of how the family members and the health carers are coping with the situation and, “[e]ffective communication with all involved should be maintained and lines of communication made clear and open. The knowledge that help is available is often a reassurance and can influence the place of death” (Adam).
In the management of pain the following route routes of administration of drugs for last 48 hours is prescribed by Jim Adam: Sublingual route of administration involves both the Antiemetic and Sedative or anxiolytic types. They include Hyoscine hydrobromide (0.3 mg/6 hours), Prochlorperazine 3-6, mg/12 hours and Lorazepam 0.5-2 mg/6 hours (fast acting and short duration)
The Transdermal route of administration involves Opioids and Antiemetic. They include Fentanyl (only if patient already using patches) and Hyoscine hydrobromide 0.5 mg/72 hours (Transcop)
If the patient is unable to take drugs orally the subcutaneous route of administration will be followed. In this route of administration Diamorphine, with the individual dose titration, is the highly approved opioid. But Diclofenac is the non-steroidal drug. It is anti-inflammatory in nature. The expected dose is 150 mg/24 hours.
Antiemetics includes Cyclizine. Its dose is 25-50 mg bolus every 8 hours, but it can be increased up to 150 mg/24 hours. Also Metoclopramide (10 mg bolus every 6 hours) can be prescribed as its complementary. (40-80 mg/24 hours). “Hyoscine hydrobromide (also dries secretions) 0.4-0.6 mg bolus, up to 2.4 mg/24 hours, Methotrimeprazine (also sedative at higher doses) 25 mg/ml ampoule, 6.25-25 mg bolus, 6.25 mg titrated up to 250 mg/24 hours via syringe driver” (Adam).
Haloperidol can be used as Sedative. It is also useful for the confusion of the patient if his or her confusion is assisted with altered sensorium. The recommended dose is 2.5-5 mg bolus, 5-20 mg/24 hours. Midazolam is effective and anxiolytic and anticonvulsant, if it is applied at smaller doses. The recommended dose is 2.5-10 mg bolus, 5-60 mg/24 hours. If the patient is distressed with nausea and vomit associated with bowel obstruction, Sonatostatin analogue is effective.
It includes Octreotide and its applicable dose is 150-600 µg/24 hours. Individual dose of Morphine will be made by pharmacist and it will be taken by the patient every 4 hours and Oxycodone, with 30-60 mg/8 hours can be prescribed for the management of pain of pain if the patient is unable to use the oral route administration. These opioids are highly recommended because of their solubility. Besides, non-steroidal anti-inflammatory drugs are also recommended. Diclofenac (100mg) will be prescribed daily. Prochlorperazine is useful as antiemetic. The recommended is 25 mg twice daily. Also domperidone 30-60 mg/6 hours can be prescribed with the previous dose of Prochlorperazine.
Cyclizine with the dose of 50 mg/8 hours can also be used as supplementary. Chlorpromazine is used as antiemetic though it is sedative also. It (with the dose of 100 mg/8 hours) is equivalent to 50 mg/8 hours orally. Diazepam can be used as sedative. It is useful for its anxiolytic and anticonvulsant effect). It can be used in rectal tubes with the dose of 5-10 mg. “All subcutaneous preparations diluted in sterile water except diclofenac (0.9% saline) Compatible with diamorphine but liable to precipitate as concentrations increase Compatible with diamorphine” (Adam).
The use of opioids is not able to get response from all pains. Bone pain does not response to opioids. Rather they are responsive to a non-steroidal anti-inflammatory drug. Again muscle spasm is, as Jim Adam suggests, responsive to diazepam. Also some other non-drug measures may be helpful in such cases. Massaging the body of the patient may help him or her to get temporal relief of the pain. Adam expresses his opinion as “[a] pressure sore requires a change of position, a comfort dressing, local anaesthetic gel, and an appropriate mattress; and a distended bladder and loaded rectum require catheterisation and rectal evacuation respectively.”