Palliative Care Summary PDF

PALLIATIVE SUMMARY  Palliative care and Pain management Definition of palliative care: o Palliative Care is comprehensive, interdisciplinary care for patients whose disease is serious or life- threatening, chronic, and progressive, or unresponsive to curative tr...

PALLIATIVE SUMMARY  Palliative care and Pain management Definition of palliative care: o Palliative Care is comprehensive, interdisciplinary care for patients whose disease is serious or life- threatening, chronic, and progressive, or unresponsive to curative treatment such as cancer. o It includes pain and symptoms management as well as psychological, emotional and spiritual care. o The goal of palliative care is to achieve the best quality of life for patients and their families, regardless of life expectancy. o Palliative care is specialized medical care focused on identifying and relieving the pain and other symptoms of a serious illness. Its goal is to improve quality of life for such patients at any stage of illness regardless of current treatment plans, and it is tailored to the needs of the patient and the family. o Palliative care is a crucial part of integrated, people-centered health services. o Relieving serious health-related suffering, be it physical, psychological, social, or spiritual, is a global ethical responsibility. o Palliative Care is focused on quality of life rather than curing disease. o It is estimated that globally only 14% of patients who need palliative care receive it. What is palliative care? o Is a care to achieve the best quality of life for patients and their families. o It can be given with or without curative care. o Is an approach to care for the person, not just the disease. o The goal is to prevent or treat, as early as possible, the symptoms and side effects of the disease and its treatment, in addition to any related psychological, social, and spiritual problems. o Patients may receive palliative care in the hospital, an outpatient clinic, a long-term care facility, or at home under the direction of a licensed health care provider. o Anyone can receive palliative care regardless of the age or stage of disease. o Many of the same methods that are used to treat cancer, such as medicines and certain treatments, can also be used for palliative therapy to help a patient feel more comfortable: ▪ For example, doctors may give chemotherapy or radiation therapy to slow the growth of a tumor that is causing pain. ▪ Or surgery may be performed to remove a mass that is pressing on certain nerves and causing pain. Who gives palliative care? o Palliative care is usually provided by palliative care specialists, health care practitioners who have received special training and/or certification in palliative care. o They provide holistic care to the patient and family or caregiver focusing on the physical, emotional, social, and spiritual issues. o Often, palliative care specialists work as part of a multidisciplinary team that may include doctors, nurses, registered dieticians, pharmacists, occupational therapists, physical therapists, psychologists, and social workers. o The palliative care team works together with the oncology care team to manage a person's care and maintain the best possible quality of life for them. o Palliative care specialists also provide caregiver support, facilitate communication among members of the health care team, and help with discussions focusing on goals of care for the patient. What issues are addressed in palliative care? o The physical and emotional effects of cancer and its treatment may be very different from person to person. Palliative care can address a broad range of issues, integrating an individual’s specific needs into care. o A palliative care specialist will take the following issues into account for each patient: ▪ Physical: Pain, fatigue, loss of appetite, nausea, vomiting, shortness of breath, and insomnia. ▪ Emotional: Depression, anxiety, and fear are only a few of the concerns that can be addressed through palliative care. ▪ Spiritual: With a cancer diagnosis, patients and families often look more deeply for meaning in their lives. Some find the disease brings them closer to their faith or spiritual beliefs, whereas others struggle to understand why cancer happened to them. An expert in palliative care can help people explore their beliefs and values so that they can find a sense of peace or reach a point of acceptance that is appropriate for their situation. ▪ Practical needs: Palliative care specialists can also assist with financial and legal worries, insurance questions, and employment concerns. Discussing the goals of care is also an important component of palliative care. Such discussions can also include talking about advance directives and helping guiding communication among family members, caregivers, and members of the oncology care team. ▪ Caregiver needs: Family members and friends are an important part of cancer care. Like the patient, they have changing needs. It’s common for many caregivers to become overwhelmed by the extra responsibilities placed upon them. Many find it hard to care for their loved one who is sick while trying to handle other obligations, such as work, household duties, and taking care of their family. Uncertainty about how to help their loved one with medical situations, inadequate social support, and emotions such as worry, and fear can also add to caregiver stress. When is palliative care used in cancer care? o Palliative care may be provided at any point during cancer care, from diagnosis to the end of life. o When a person receives palliative care, they may continue to receive cancer treatment. How does someone access palliative care? o The oncologist (or someone on the oncology care team) is the first person one should ask about palliative care. They may refer the patient to a palliative care specialist, depending on their physical and emotional needs. o Some national organizations have databases for referrals. For example, the Center to Advance Palliative Care has a list of providers. o The National Hospice and Palliative Care Organization’s website also has a list of providers. What is the difference between palliative care and hospice? o “Hospice is a special concept of care designed to provide comfort and support to patients and their families when a life-limiting illness no longer responds to cure-oriented treatments.” o Whereas palliative care can begin at any point during cancer treatment, hospice care begins when curative treatment is no longer the goal of care, and the sole focus is quality of life. o Palliative care can help patients and their loved ones make the transition from treatment meant to cure or control the disease to hospice care by: ▪ Preparing them for physical changes that may occur near the end of life. ▪ Helping them cope with the different thoughts and emotional issues that arise. ▪ Providing support for family members and caregivers. Who pays for palliative care? o Private health insurance usually covers palliative care services. Medicare and Medicaid also pay for some kinds of palliative care. For example: ▪ Medicare Part B pays for some medical services that address symptom management. ▪ Medicaid coverage of some palliative care services varies by state. o If patients do not have health insurance or are unsure about their coverage, they should check with a social worker or their hospital’s financial counselor. Is there any research that shows palliative care is beneficial? o Research shows that palliative care and its many components are beneficial to patient and family health and well-being. o In recent years, some studies have shown that integrating palliative care into a patient’s usual cancer care soon after a diagnosis of advanced cancer can improve their quality of life and mood and may even prolong survival. o The American Society of Clinical Oncology recommends that all patients with advanced cancer receive palliative care.  Presenting problems in palliative care Pain “Next chapter”. Breathlessness: o Breathlessness is one of the most common symptoms in palliative care and is distressing for both patients and carers. Patients should be fully assessed for reversible causes “Pleural effusion, Heart failure, Bronchospasm”. If so, this should be managed in the normal way. If symptoms persist, additional measures may be necessary. o There are many potential causes of dyspnea in cancer patients and in other chronic diseases: ▪ Direct involvement of the lungs. ▪ Muscle loss secondary to cachexia. ▪ Anxiety and fear of dying can all contribute: A cycle of panic and breathlessness, often associated with fear of dying. o Management of breathlessness: ▪ Exploration of precipitating factors, patient education about breathlessness and effective breathing are effective in management. ▪ Non-pharmacological approaches: Hand-held fan, Pacing, and Following a tailored exercise program. ▪ Oxygen: Is indicated only if there is significant hypoxia. ▪ Opioids: Through both their central and peripheral action, can palliate breathlessness. Both oral and parenteral opioids are effective. A low dose should be used initially and titrated against symptoms. ▪ If anxiety: a quick-acting benzodiazepine, such as lorazepam (sublingually) Cough: o Persistent unproductive cough can be helped by opioids, which have an antitussive effect. o Troublesome respiratory secretions can be treated with: ▪ Hyoscine hydrobromide (400–600 μg every 4–8 hours). ▪ As an alternative, glycopyrronium can be useful and is given by subcutaneous infusion (0.6–1.2 mg in 24 hours). Nausea and vomiting: o The presentation of nausea and vomiting differs depending on the underlying cause. o Large-volume vomiting with little nausea is common in intestinal obstruction, whereas constant nausea with little or no vomiting is often due to metabolic abnormalities or adverse effects of drugs. o Vomiting related to raised intracranial pressure is worse in the morning. o Different receptors are activated, depending on the cause or causes of the nausea. For example, dopamine receptors in the chemotactic trigger zone in the fourth ventricle are stimulated by metabolic and drug causes of nausea, whereas gastric irritation stimulates histamine receptors in the vomiting center via the vagus nerve. o Management: ▪ Reversible causes, such as hypercalcemia and constipation, should be treated appropriately. ▪ Drug-induced causes should be considered, and the offending drugs stopped if possible. ▪ As different classes of antiemetic drug act at different receptors, antiemetic therapy should be based on a careful assessment of the probable causes and a rational decision to use a particular class of drug. ▪ The subcutaneous route is often required initially to overcome gastric stasis and poor absorption of oral medicines. Gastrointestinal obstruction: o Gastrointestinal obstruction is a frequent complication of intra-abdominal cancer. o Patients may have multiple levels of obstruction and symptoms may vary greatly in nature and severity. o Surgical mortality is high in patients with advanced disease and obstruction should normally be managed without surgery. o The key to effective management is to address the presenting symptoms: colic, abdominal pain, nausea, vomiting, intestinal secretions – individually or in combination, using parenteral drugs that do not cause or worsen other symptoms. o This can be problematic when a specific treatment worsens another symptom: ▪ Cyclizine improves nausea and colic responds well to anticholinergic agents, such as hyoscine butylbromide, but both slow gut motility. ▪ Nausea will improve with metoclopramide, although this is usually contraindicated in the presence of colic because of its prokinetic effect. ▪ There is some low-level evidence that glucocorticoids (dexamethasone 8 mg) can shorten the length of obstructive episodes. ▪ Somatostatin analogues, such as octreotide, will reduce intestinal secretions and therefore large volume vomits. ▪ Occasionally, a nasogastric tube is required to reduce gaseous or fluid distension. Weight loss: o Patients with cancer lose weight for a variety of reasons, including: ▪ Reduced appetite. ▪ Anxiety. ▪ Depression. ▪ The effects of the drug TTT. ▪ A syndrome of (cancer cachexia): This results from an alteration of metabolism caused by a complex interaction of tumor-related factors and the body’s response to these factors, resulting in muscle loss, along with anorexia. o Treatment involves prescribing: ▪ Exercise to maintain muscle mass and strengthen muscles. ▪ Nutritional support: Ensuring that there is an adequate calorie intake and providing nutritional supplements. ▪ Anti-inflammatory medication to attenuate systemic inflammation. ▪ Glucocorticoids can temporarily boost appetite and general well-being but may cause false weight gain by promoting fluid retention. Their benefits need to be weighed against the risk of side-effects, and glucocorticoids should generally be used on a short-term basis only. Anxiety and depression: o Anxiety and depression are common in palliative care, but the diagnosis may be difficult, since the physical symptoms of depression are similar to those of advanced cancer. o It is therefore important to realize that these symptoms are not inevitable in advanced cancer. o Patients should still expect to look forward to things and to enjoy them, within the context of the situation. o Simply asking the question ‘Do you think you are depressed?’ can be very useful in deciding with the patient whether antidepressants or psychological interventions may be of benefit. o In this regard, psycho-oncology has been evolving rapidly and there is now good evidence for the role of ‘talk therapy’ in palliative care, along with other appropriate management of anxiety and depression. o If antidepressants are required: ▪ Citalopram (Celexa: selective serotonin reuptake inhibitor (SSRI)). ▪ Mirtazapine (Remeron): A tetracyclic antidepressant: Inhibits the central presynaptic alpha-2-adrenergic receptors, which causes an increased release of serotonin and norepinephrine. Used in the treatment of major depression and is used off-label as a drug for insomnia and to increase appetite). Delirium and agitation: o Many patients become confused or agitated in the last days of life. o It is important to identify and treat potentially reversible causes, unless the patient is too close to death for this to be feasible. o Early diagnosis and effective management of delirium are extremely important. o As in other palliative situations, it may not be possible to identify and treat the underlying cause, and the focus of management should be to ensure that the patient is comfortable. o It is important to distinguish between behavioral change due to pain and that due to delirium, as opioids will improve one and worsen the other. o It is important, even in the care of the actively dying patient, to treat delirium with antipsychotic medicines, such as haloperidol, rather than to regard it as distress or anxiety and use benzodiazepines only. Dehydration: o Deciding whether to give intravenous fluids can be difficult when a patient is very unwell, and the prognosis is uncertain. o A patient with a major stroke, who is unable to swallow but is expected to survive the event, will develop renal impairment and thirst if not given fluids and should be hydrated. o On the other hand, when a patient has been deteriorating and is clearly dying, parenteral hydration needs very careful consideration, and it is very important to manage this on an individual basis. o Comfort and avoidance of distress in the family are the primary aims. o Where a patient and family are happy with meticulous oral hygiene and care to reduce the sensation of dryness in the mouth, this is usually more appropriate and effective at the end of life than parenteral hydration, which by itself will not necessarily improve the sensation of dryness. o In some patients, parenteral hydration will simply exacerbate pooling of secretions, causing noisy and distressing breathing. o Each decision should be individual and discussed with the patient’s family. Pain definition and management Definition: o Pain is an unpleasant sensory and emotional experience associated with actual or potential tissue damage. International Association for the Study of Pain (1979) o Somatopsychic phenomenon modulated by: ▪ Patients’ mood. ▪ Patients’ morale. ▪ Meaning of pain for the patient o 75% of advanced cancer patients experience pain: ▪ One third has a single pain. ▪ One third has 2 pains. ▪ One third has 3 or more pain. Pain pathways: o There is neither a direct nor simple ‘pain-specific’ conduit within the nervous system. Instead, the experience of pain is the final product of a complex information-processing network. Following delivery of a noxious stimulus, a series of electrical and chemical events occur. o The first stage (1st order neurons) is transduction, where external noxious energy is converted into electrophysiological activity. o In the second stage (2nd order neurons), transmission, this coded information is relayed via the spinal cord (spinothalamic tract) to the brainstem and thalamus. o Finally, (3rd order neuron) pain modulation; connections between the thalamus and higher somatosensory cortical centers control perception and integrate the affective response to pain. o Myelinated A-delta and Unmyelinated C fibers respond to thermal, mechanical, electrical, or chemical stimuli. o Release of excitatory neurotransmitter glutamate and substance P. o Information transmitted to thalamus by spinothalamic tract. o Pain modulation: frontal cortex, hypothalamus, descending pathway, endogenous analgesia by releases of beta-endorphin, enkephalins, opioid peptides. Descending pain mechanisms: o The brainstem plays a crucial role in the modulation of pain processing at the spinal cord level. o Pathways originating in the cortex and thalamus are relayed via the rostroventromedial (RVM) medulla and adjacent areas to the dorsal horn of the spinal cord. o These areas of the brainstem also receive afferent input from the superficial dorsal horn and from the peri-aqua ductal grey (PAG), nucleus tractus solitarius (NTS) and parabrachial nucleus, thus forming spin bulbospinal loops. o The balance between the descending facilitatory and inhibitory pathways is subject to change following injury and an imbalance has been implicated in the development of chronic pain states. o Serotonin, noradrenaline, and endogenous opioids are important transmitters in descending system, and this is the basis for the use of antidepressants and opioids in the treatment of chronic pain. Types of pain: o Acute Pain: is often limited, warns of tissue damage. Often with signs of autonomic nervous system activation. Intensity of pain indicates severity of injury or disease. o Chronic non-cancerous pain (> 3 months) - pain no longer signals tissue damage. Autonomic signs are often absent. o Cancer pain: related to cancer and its treatment and metastatic sites. Mechanism of pain based on Pathophysiology: o Nociceptive pain: Results from stimulation of pain receptors: ▪ Somatic: damage to body tissue, well localized ▪ Visceral: from viscera, poorly localized, may have nausea o Neuropathic pain: Results from dysfunctions or lesions in either the central or peripheral nervous systems. o Mixed pain syndromes: multiple or unknown mechanisms (e.g. headaches, vasculitis syndromes). o Psychogenic Pain: somatoform disorders, conversion reactions. Pain management: o Evaluation of the patient and his pain. o Begins with locating the pain: ‘where exactly is your pain?’ o Multidimensional process. o Duration of pain. Pain Assessment: o Obtain history of pain: a detailed history to determine the presence of persistent pain, breakthrough pain and their effect on function: ▪ Ask about onset, pattern, duration, location, intensity, and characteristics of the pain, Find out aggravating or palliating factors, and the impact on the patient. o Evaluate psychological state of patient: ▪ Screen for depression. ▪ Anxiety. ▪ Assess social networks and family involvement. o Physical examination. o Investigations: laboratory and radiological. Characteristics of pain: o Palliative factors: what decreases it? ▪ Relief of other symptoms. ▪ Sleep. ▪ Understanding. ▪ Companionship. ▪ Creative activity. ▪ Relaxation, reduction in anxiety, elevation of mood, drugs. o Provocative factors: what increases it? ▪ Discomfort boredom. ▪ Insomnia: mental isolation. ▪ Fatigue: social abandonment. ▪ Anxiety, Fear, Anger, Sadness, depression. o Quality, Radiation, Severity, Temporal factors. Causes of cancer pain: o Cancer: primary lesion: ▪ Nerve compression or infiltration, Plexopathy, Spinal cord compression, Thalamic tumor. o Treatment of cancer: mucositis: ▪ Surgical incision pain, phantom limb pain, peripheral neuropathy, brachial plexopathy. o Debility: constipation, muscle tension: ▪ Post herpetic neuralgia. o Metastasis of cancer to bone, brain, liver …. o Concurrent disorders: diabetic neuropathy, post stroke pain, spondylosis, osteoarthritis. Mechanism of cancer pain: o Functional. o Somatic muscle tension pains: tension headache, cramp. o Visceral: distension, colic. o Pathological. o Nociceptive: tissue distortion or injury. o Neuropathic: compression or injury to nerves. Management of cancer pain: o Modification of pathological process: ▪ Analgesics (opioids, non-opioids & adjuvants). ▪ Non-drug methods: massage, heat pads ▪ Interventional pain techniques: Sympathetic ganglion block/neurolysis: Chemical (alcohol, phenol) - Cryotherapy - Radiofrequency: Thermocoagulation). Stellate ganglion block. Epidural steroid injection. Celiac plexus block. o Psychological: ▪ Interruption of pain pathways. ▪ Modification of way of life and environment: Avoid precipitating activity. Immobilization of painful parts; cervical collar, slings, surgery. Walking aid. Analgesics (opioids, non-opioids & adjuvants): o Pharmacological treatments are the mainstay of management in cancer-associated pain. o A stepwise approach is adopted, following the principles of the World Health Organization (WHO) analgesic step ladder, in which analgesia that is appropriate for the degree of pain is prescribed first. o STEP 1: Patients with mild pain should be started on a non-opioid analgesic drug, such as paracetamol (1 g 4 times daily) or a NSAID +/- adjuvant (anti-depressant, ant-convulsant). o STEP 2: If the patient fails to respond adequately or has moderate pain, a weak opioid, such as codeine (60 mg 4 times daily) or tramadol (50-100mg 4 times daily), should be added. This can be prescribed separately or in the form of the compound analgesic co-codamol (codeine and Paracetamol).  o STEP 3: If pain relief is still not achieved or if the patient has severe pain, a strong opioid (morphine, fentanyl patch) should be substituted for the weak opioid. If the pain is severe at the outset, strong opioids should be prescribed and increased or titrated according to the patient’s response. o It is important not to move ‘sideways’ (change from one drug to another of equal potency), which is a common problem during step 2 of the analgesic ladder. Common drugs used in pain management include: o Non-steroidal anti-inflammatory drugs (NSAIDs). o Paracetamol and capsaicin to reduce the transduction of pain. o Local anesthetics to reversibly block the transmission of pain. o Opioids, which act at spinal and supraspinal areas to modify afferent transmission and facilitate descending control pathways. o Tricyclic antidepressants and selective noradrenaline reuptake inhibitors (SNRIs), which maintain monoamine levels in the descending pathways. o Anticonvulsants, which act to dampen synaptic transmission globally, by interfering with sodium or calcium voltage-gated channel function, thereby reducing excitability in sensitized neurons. However, in addition to the physiological remedies outlined above, the personal impact of pain (i.e. on mood, anxiety, physical and social functioning) should always be considered and addressed, if pain management is to be successful.  Death and dying Definition of death: Either irreversible cessation of circulatory and respiratory functions or irreversible cessation of all functions of the entire brain, including the brain stem. Responses to dying and death: Although each person reacts to the knowledge of approaching death in his or her own way, there are similarities in the psychosocial responses to the situation. Stages of perception of Dying According to Kubler- Ross: o 1. Denial: On being told that one is dying, there is an initial reaction of shock. The patient may appear confused at first and may then refuse to believe the diagnosis or deny that anything is wrong. Some patients never pass beyond this stage and may go from doctor to doctor until they find one who supports their position. o 2. Anger: Patients become frustrated, irritable and angry that they are sick. A common response is,” Why me?” They may become angry at God, a friend, or a family member. The anger may be displaced onto the hospital staff or the doctors who are blamed for the illness. o 3. Bargaining: The patient may attempt to negotiate with physicians, friends or even God, that in return for a cure, the person will fulfill one or many promises, such as giving to charity or repeat an earlier faith in God. o 4. Depression: The patient shows clinical signs of depression- withdrawal, psychomotor retardation, sleep disturbances, hopelessness, and possibly suicidal ideation. The depression may be a reaction to the effects of the illness on his or her life or it may be in anticipation of the approaching death. o 5. Acceptance: The patient realizes that death is usual and accepts the universality of the experience. People with strong religious beliefs and those who are convinced of a life after death can find comfort in these beliefs. Planning for dying: o There have been dramatic improvements in the medical treatment and care of patients with cancer and other illnesses over recent years, but the fact remains that everyone will die at some time. o Planning for death should be actively considered in patients with chronic diseases when the death is considered to be inevitable. o Doctors rarely know exactly when a patient will die but are usually aware that an individual is about to die and that medical interventions are unlikely to extend life or improve its quality significantly. o Most people wish their doctors to be honest about this situation to allow them time to think ahead, make plans and address practical issues. o A few do not wish to discuss future deterioration or death; if this is felt to be the case, avoidance of discussion should be respected. o For doctors, it is helpful to understand an individual’s wishes and values about medical interventions at this time, as this can help guide decisions about interventions. o It is important to distinguish between interventions that will not provide clinical benefit (a medical decision) and those that do not confer sufficient benefit to be worthwhile (a decision that can only be reached with a patient’s involvement and consent). o A common example of this would be decisions about not attempting cardiopulmonary resuscitation. o In general, people wish for a dignified and peaceful death and most prefer to die at home. o Families also are grateful for the chance to prepare themselves for the death of a relative, by timely and gentle discussion with the doctor or other health professionals. o Early discussion and effective planning improve the chances that an individual’s wishes will be achieved. o Structures for assessment and planning around end-of-life care are for guidance only and the focus should evolve with the individual patient. Diagnosing dying: o When patients with cancer or other conditions become: Bed-bound, Semi-comatose, Unable to take tablets, only able to take sips of water, Confused, Lack of appetite, Drowsy, Withdrawal and no socialization, Bowel and bladder control loss, Cool skin, abnormally breathing, Involuntary movement. o With no reversible cause, they are likely to be dying and many will have died within 2 days. Changes in the body after dying: o Rigor Mortis: Body becomes stiff within 4 hours after death as a result of decreased ATP production. ATP keeps muscles soft and flexible. o Algor Mortis: Temperature decreases by a few degrees each hour. The skin loses its elasticity and will tear easily. o Livor Mortis: Dependent parts of body become discolored. The patient will likely be lying on their back, their backside being the 'dependent' body part. The discoloration is a result of blood pooling, as the hemoglobin breaks down. Management of dying: o Once the conclusion has been reached that a patient is going to die in days to a few weeks, there is a significant shift in management. o Symptom control, relief of distress and care for the family become the most important elements of care. o Medication and investigation are justifiable only if they contribute to these ends. o When patients can no longer drink because they are dying, intravenous fluids are usually not necessary and may cause worsening of bronchial secretions; however, this is a decision that can be made only on an individual basis. o Management should not be changed without discussion with the patient and/or family. o Medicines should always be prescribed for the relief of symptoms. For example: ▪ Morphine or diamorphine may be used to control pain. ▪ levomepromazine to control nausea. ▪ Haloperidol to treat delirium. ▪ Diazepam or midazolam to treat distress. ▪ Hyoscine hydrobromide reduces respiratory secretions. o Side-effects, such as drowsiness, may be acceptable if the principal aim of relieving distress is achieved. o It is important to discuss and agree the aims of care with the patient’s family. o Poor communication with families at this time is one of the most common reasons for family distress afterwards and for formal complaints. Ethical considerations: o The overwhelming force in caring for any patient must be to listen to that patient and family and take their wishes on board. o Patients know when health-care professionals are just receiving the information, as opposed to receiving and understanding the information in the context of the patient, their illness and needs, their careers, and the socioeconomic context. o It is impossible to provide holistic care for a patient without this comprehension. o Every patient is unique, and it is important to avoid slipping into a tick-box mentality in addressing items that should be covered in patients with advanced, incurable disease. o While the key to successful palliative care is effective interdisciplinary working, every patient needs to know who has overall responsibility for their care. o Trust in the whole team will come through a solid lead working with a team who are appropriately informed and in sympathy with the patient’s situation, each having a clear role. o Families and other carers are often unprepared for the challenge of caring for a dying person. o It can be an exhausting experience, both emotionally and physically, and without a critical number of carers battle fatigue can ensue, resulting in urgent admissions. o With much discussion about advance directives, we should not lose sight of the reality of changing circumstances and wishes. o Good anticipatory care means not just providing for new physical symptoms, but also planning for any time when care at home becomes no longer possible. Capacity and advance directives: o The wishes of the patient are paramount in Western societies, whereas in other cultures the views of the family are equally important. o If a patient is unable to express their view because of communication or cognitive impairment, that person is said to lack ‘capacity’. o In order to decide what the patient would have wished, as much information as possible should be gained about any previously expressed wishes, along with the views of relatives and other health professionals. o An advance directive is a previously recorded, written document of a patient’s wishes. o It should carry the same weight in decision-making as a patient’s expressed wishes at that time but may not be sufficiently specific to be used in a particular clinical situation. o The legal framework for decision-making varies in different countries. Euthanasia: o In the UK and Europe, between 3% and 6% of dying patients will ask a doctor to end their life. o Many of these requests are transient; some are associated with poor control of physical symptoms or a depressive illness. o All expressions of a wish to die are an opportunity to help the patient discuss and address unresolved issues and problems. o Reversible causes, such as pain or depression, should be treated. o Sometimes, patients may choose to discontinue life-prolonging treatments, such as diuretics or anticoagulation, following discussion and the provision of adequate alternative symptom control. o However, there remains a small number of patients who have a sustained, competent wish to end their lives, despite good control of physical symptoms. o Euthanasia is now permitted or legal under certain circumstances in some countries but remains illegal in many others; public, ethical, and legal debate over this issue is likely to continue and is often influenced by many complex non-palliative care issues. o The European Association for Palliative Care does not see euthanasia or physician-assisted suicide as part of the role of palliative care physicians. Nutrition in palliative care Introduction: o Nutrition is an essential component of palliative care, which aims to provide comfort and relief to patients with serious illnesses. Patients in palliative care may experience a range of symptoms that can affect their ability to eat, such as pain, nausea, vomiting, and fatigue. Proper nutrition can help improve quality of life and alleviate some of these symptoms. o The goal of nutrition in palliative care is to ensure that the patient is getting the appropriate nutrients to meet their needs, while also considering their individual preferences, values, and goals. The focus should be on promoting comfort and pleasure in eating rather than strict dietary restrictions or goals. Principals of nutrition in palliative care: o Assessment: A thorough nutritional assessment is essential to identify the patient's nutritional needs, preferences, and any barriers to eating. o Individualized plan: A tailored plan should be developed based on the patient's nutritional needs, preferences, and goals, as well as any medical conditions. o Symptom management: Nutrition interventions should be targeted towards managing symptoms such as pain, nausea, and constipation. For example, the use of soft, easily digestible foods, small and frequent meals, and antiemetics may help alleviate nausea. o Emotional support: Eating can be a source of comfort and pleasure, so it is important to provide emotional support to patients who may be experiencing anxiety or depression related to eating. o Communication: Communication with the patient and their family is key to ensuring that their nutritional needs and preferences are met, and any concerns or changes in their appetite or weight are addressed. Nutrition should be supportive and should aim to optimize the management of nutrition-related symptoms, thus improving the sense of wellbeing felt by the patient. Nutrition assessment: o The first step in managing the nutritional needs of a palliative care patient is to conduct a comprehensive nutritional assessment, it includes: ▪ Evaluating the patient's nutritional state. ▪ Medical history: Identifying any underlying medical conditions that may affect their nutritional needs. ▪ Assessing any symptoms that may impact their ability to eat. ▪ Anthropometric measurements: height, weight, and body mass index “BMI”. ▪ Laboratory tests: CBC, urine analysis. o The nutritional assessment should be conducted by a registered dietitian or other qualified healthcare professional with expertise in nutrition. Tailored nutritional plan: o Once the nutritional assessment is completed, a tailored nutritional plan should be developed for each patient. o The nutritional plan should be based on the patient’s individual needs and goals, considering their medical condition, symptoms, and personal preferences. o The nutritional plan may include modifications to the patient's diet, such as adding high protein or high calorie food, or the use of nutritional supplements. Strategies to help develop Tailored nutrition plan for PC patients: o Caloric and Protein Requirements: Caloric and protein requirements should be calculated based on the patient's age, gender, weight, and activity level, as well as their medical condition and symptoms. o Meal Planning: Meal planning should be tailored to the patient's individual needs and preferences and should include a variety of foods from all food groups. o Nutritional Supplements: Nutritional supplements may be recommended to meet the patient's nutrient needs. This may include supplements such as protein powder, meal replacement shakes, or liquid supplements. o Texture Modification: Texture modification may be necessary to accommodate any swallowing difficulties or other issues that may impact the patient's ability to eat. Components of Nutrition in Palliative Care: o Energy Requirements: Palliative care patients often have decreased energy requirements due to changes in body composition, metabolism, and decreased physical activity. o Protein Requirements: Palliative care patients may have increased protein requirements due to changes in body composition, metabolism, and wound healing. o Micronutrient Requirements: Palliative care patients may have increased micronutrient requirements due to changes in metabolism, increased oxidative stress, and altered immune function. o Hydration Requirements: Palliative care patients may have increased hydration requirements due to decreased fluid intake, increased fluid losses, and changes in fluid balance. Nutrients required for specific people in palliative care: o Elderly: may require higher amounts of Vit B12 and Vit D for bone health. o Cancer patients: increase protein, iron, Vit B6, and folic acid requirements. o Patients with chronic illness: increased protein, Vit B12, calcium, and iron requirements. Nutrition therapy for cancer patients: o The guidelines comprise of: ▪ Eat a variety of foods with an emphasis on plant sources. ▪ Plenty of fruits and vegetables. ▪ Plenty of whole grains and legumes (High fiber diet). ▪ Limit consumption of red meat, specially processed and fatty meat. ▪ Eat a low-fat diet. ▪ Maintain a healthy weight “18.5-24.9 kg/m2 BMI”. ▪ Maintaining physical activity. ▪ Excessive consumption of alcohol is to be discouraged. ▪ Limit consumption of salted food and use of table salt. ▪ Avoid use of tobacco in any form. Nutrition for the diabetic patients and it's rationale: o Diabetic patients need to pay close attention to their nutrition because their bodies have difficulty regulating blood sugar levels. The rationale for this is that the food they consumed directly affects their blood glucose levels. o Hence, managing their diet is a critical component of their diabetes management, here are some key nutrition guidelines for diabetic patients and the rationale behind to them: ▪ Limit sugar intake: high sugar intake may lead to complications such as neuropathy blindness and kidney disease. ▪ Choose complex carbohydrates: whole grain bread, brown rice, and whole wheat pasta are better for diabetic patients then simple carbohydrates like white bread, rice, and pasta. ▪ Control portion size: consuming too much food can cause a rapid rise in blood sugar levels. ▪ Choose lean protein sources: such as skinless chicken, fish, and legumes. ▪ Eat plenty of fruits and vegetables: they are rich in nutrients, fiber, and antioxidants. Nutrition on people living with HIV/AIDS: o HIV patients need a variety of nutrition since they are susceptible to many infections. They need food high in Vitamins such as green vegetables or fruits. They should avoid food rich in saturated fat, sugars, and salt. Importance of nutrition to patient on palliative care: o Improves quality of life. o Supports healing. o Maintains body weight. o Supports immune system. o Reduces fatigue. o Improves mood. Limitations of nutrition of palliative care patients: o Appetite loss. o Nausea and vomiting. o Malnutrition. o Difficulty eating. Effects of nutrition to palliative care patients: o Improved physical function. o Improved mood. o Reduced risk of infections. o Maintained body weight. o Improved quality of life. o Improved immune function. Factors affecting nutrition to palliative care patients: o Appetite changes. o Nausea & vomiting. o Pain. o Fatigue. o Changes in taste and smell. o Medications. o Psychological factors. o Physical limitations. It's important for palliative care teams to be aware of these factors and work with patients to address them in order to maintain good nutrition and overall will being. Types of feeding: o Oral feeding: foods and fluids orally. If the patient has difficulty swallowing, modifications may be made to the food consistency, or the patient may be taught specific swallowing techniques to make it easier. o Enteral feeding: through a tube that is inserted through the mouth, nose, or stomach. This is often used when the patient is unable to eat or drink orally due to medical conditions such as stroke or cancer. o Parenteral feeding: providing nutrition through a vein, usually through an IV line. This is typically used when the patient is unable to receive nutrition through the digestive system. Consideration for feeding: o Patient preferences. o Medical condition. o Goals of care: if the patient is nearing the end of life and the goal is to provide comfort care, enteral or parenteral feeding may not be necessary. o Potential benefits and risks: enteral feeding may increase the risk of aspiration pneumonia, while parenteral feeding may increase the risk of infections. Conclusion: o Nutrition plays a vital role in the overall well-being of individuals in palliative care. It is essential for maintaining good health, managing symptoms and side effects, and promoting mental and emotional well-being. However, there may be limitations to nutrition for individuals in palliative care, such as loss of appetite, difficulty swallowing, or limited mobility. It's important for healthcare providers to assess the nutritional needs of individuals in palliative care and support them in making choices that meet those needs.