Palliative and End-of-Life Care

You may think that palliative care is offered only during the final days of life, only to people with cancer or only after all other treatment has stopped. You may also interpret a hospice referral, anticipatory medicines or a syringe pump as proof that death is immediately approaching. Palliative care is active care focused on comfort, function and quality of life. It can begin earlier and can be provided alongside treatment for the underlying illness.

Palliative care is active, whole person care Palliative care aims to improve quality of life when you are living with a serious, progressive or life limiting condition. It addresses pain and other physical symptoms, emotional distress, social and practical problems, family and relationship needs, spiritual, religious or existential concerns, communication and decision making, and support for carers. This is sometimes called a holistic approach because it considers you as a whole person rather than focusing only on a diagnosis. Palliative care is not the same as the last days of life Palliative care may be useful for months or years. End of life care generally describes support during the period when someone is approaching death. Depending on the condition, this may include the final weeks and months or a longer period of increasing vulnerability. Care during the last days of life is a more specific phase requiring close review of comfort, communication, hydration, medicines and signs of change. Palliative care can begin alongside disease treatment You may receive palliative care while also receiving chemotherapy or radiotherapy, heart failure treatment, dialysis or conservative kidney care, treatment for chronic lung disease, antibiotics, surgery, neurological care, rehabilitation, transfusions, nutritional support, or other condition specific treatment. The purpose of palliative involvement is not necessarily to replace these treatments. It may help manage symptoms, consider treatment burden and clarify your goals. As your condition changes, the balance between disease directed treatment and comfort focused care may also change. Palliative care is not limited to cancer Palliative care may support people living with cancer, advanced heart disease, chronic lung disease, kidney or liver failure, progressive neurological conditions, dementia, severe frailty, multiple complex health conditions, or other progressive or life limiting illnesses. Access should be based on need rather than diagnosis alone. You do not have to be certain about prognosis It can be difficult to predict how long someone will live, particularly with organ failure, frailty or conditions that fluctuate. Palliative support should not be withheld solely because the exact prognosis is uncertain. A clinician may discuss what is known, what remains uncertain, the most likely pattern, possible sudden changes, which treatments may help, what should happen if health worsens, and what matters most to you. You can ask how confident the team is and what would make them revise the plan. Symptom control begins with understanding the symptom Common concerns may include pain, breathlessness, nausea or vomiting, constipation, fatigue, weakness, poor appetite, dry mouth, anxiety, low mood, sleep disturbance, confusion, cough, swelling, or difficulty swallowing. A symptom should not automatically be attributed to the underlying condition. Assessment may identify a reversible medical cause, a medicine side effect, infection, dehydration, constipation, urinary retention, anxiety or panic, an environmental trigger, disease progression, or several causes occurring together. The treatment plan depends on the likely cause, severity and your priorities. Pain is individual and should be reviewed Pain may arise from the illness, treatment, reduced mobility, muscle tension, pressure damage or an unrelated condition. Your team may ask about location, quality, severity, timing, triggers, effect on movement and sleep, current medicines, side effects, and what level of relief would be meaningful. Treatment may include medicines, positioning, equipment, rehabilitation, psychological approaches, procedures or treatment of the underlying cause. Not everyone approaching the end of life experiences pain. It should not be assumed, but it should be treated promptly when present. Breathlessness needs careful assessment Breathlessness can be frightening. It may relate to the underlying condition, infection, fluid, anaemia, anxiety, pain or another cause. Support may include positioning, a calm environment, air movement from a fan, breathing techniques, treatment of reversible causes, medicines for symptom relief, or oxygen when low oxygen levels are contributing. Oxygen is not automatically the best treatment for every person who feels breathless. It should not routinely be started for breathlessness unless symptomatic low oxygen is known or suspected. Severe new or rapidly worsening breathlessness still requires urgent assessment, even when you already receive palliative care. Emotional support is part of the care Living with serious illness may bring fear, sadness, anger, uncertainty, relief or changes in identity. You may worry about pain or loss of control, people who depend on you, becoming a burden, financial pressures, leaving home, dying, what happens after death, relationships, or unfinished conversations. You do not have to discuss every concern. However, you should be offered opportunities to talk in a way that suits you. Support may come from nurses, doctors, counsellors, psychologists, social workers, chaplains, faith representatives, community groups or people close to you. Spiritual care does not require religious belief Spiritual concerns can involve meaning, hope, identity, values, connection, guilt or forgiveness, nature, faith, ritual, or what gives you peace. You may be religious, spiritual without being religious, or neither. Good care should ask what matters to you rather than assume a particular belief. Social and practical problems affect health Serious illness may affect employment, income, housing, transport, childcare, caring responsibilities, equipment needs, personal care, benefits, legal planning, and social isolation. These issues can worsen physical symptoms and emotional distress. Palliative care teams may work with social care, welfare advisers, occupational therapists, community organisations and other services. General and specialist palliative care serve different needs Core palliative care may be provided by your GP, community nurses, hospital doctors and nurses, care home staff, disease specific specialists, pharmacists, and allied health professionals. These professionals should be able to assess common symptoms, communicate about goals and coordinate routine care. Specialist palliative care provides additional expertise when pain or other symptoms remain difficult to control, several symptoms interact, treatment decisions are especially complex, you or your family need additional psychological support. Communication has become difficult, care is fragmented, you have repeated unplanned admissions, the care setting is struggling to meet your needs, or support is needed around dying or bereavement. Referral does not mean that other teams stop caring for you. Specialist teams often work alongside them. Hospice care is more than inpatient care A hospice may provide outpatient appointments, day services, community visits, telephone advice, symptom review, rehabilitation, psychological support, family or carer support, short inpatient stays, care during the final days, and bereavement support. You may receive hospice support while living at home and may never be admitted to a hospice bed. Hospice care does not always mean that death is expected within days. Palliative care can be provided in different places Care may be provided at home, in a care home, in hospital, in a hospice, or across several settings. Your preferred place matters and should be discussed. However, needs can change. A symptom crisis, carer illness, equipment problem or lack of overnight support may temporarily alter what is safe or possible. If you hope to remain at home, ask who is coordinating the care, which number should be used during the day, who should be contacted at night, which symptoms need urgent help. Whether necessary medicines are available, who can administer them, whether equipment is in place, what support carers can expect, what happens if the arrangement becomes unsafe, and when hospital or hospice care would be reconsidered. A preference to remain at home should not become an expectation that relatives provide care beyond what they can safely manage. Carers need information and support A carer may need guidance about medicines, positioning, eating and drinking, personal care, equipment, recognising deterioration, contacting services, rest and respite, what to expect as illness progresses, and what to do in an emergency. Carers should not be expected to perform clinical tasks without consent, assessment, training and appropriate support. Treatments should be considered by benefit and burden A treatment may improve comfort, extend life, restore function, prevent a complication, cause side effects, require hospital attendance, interfere with time at home, or provide little realistic benefit. The same treatment may be worthwhile at one point and excessively burdensome later. Decisions should consider your goals, the likely benefit, the likelihood and severity of harm, how quickly benefit may occur, treatment burden, available alternatives, what happens without treatment, and prognostic uncertainty. Choosing not to begin, or deciding to stop, a treatment that no longer provides sufficient benefit does not mean that care stops. Withdrawing a treatment is not withdrawing care Treatments such as ventilation, dialysis, antibiotics, artificial nutrition or hospital interventions may be reviewed when their burdens outweigh expected benefits or when a person with capacity refuses them. If a treatment is withheld or withdrawn, care should continue through symptom relief, nursing care, communication, personal care, emotional support, mouth care, family support, and review of distress. The decision should be individual, lawful and clearly explained. Medicines are adjusted to your needs Palliative medicines may be used for pain, breathlessness, nausea, anxiety or other symptoms. The prescriber should consider the symptom and likely cause, previous medicine use, kidney and liver function, interactions, side effects, route of administration, and your desired balance between comfort and alertness. The aim is proportionate symptom relief, with medicines reviewed and adjusted according to benefit and harm. Opioids are not used only in the final hours Opioids may be prescribed for moderate or severe pain. In some palliative situations, they may also reduce distressing breathlessness. Doses are individual. Someone who has never taken an opioid generally requires a different starting approach from someone already using regular high doses. Possible side effects include constipation, nausea, drowsiness, confusion, itching, and slowed breathing, particularly after an excessive dose or unsafe combination. Take opioids exactly as prescribed. Keep them secure and seek advice if you become unusually difficult to wake, markedly confused or have slow or shallow breathing. Anticipatory medicines are prescribed before possible need Anticipatory medicines, sometimes called "just in case" medicines, may be supplied so that symptoms can be treated without a long delay if you become unable to swallow or develop new symptoms at home. They may cover pain, breathlessness, nausea, agitation, and noisy respiratory secretions. Having these medicines does not mean that all of them will be used or that death will necessarily occur immediately. Follow the local instructions about storage and who is authorised to administer them. A syringe pump is a route for giving medicine A syringe pump is a small device that gives medicine continuously under the skin. It may be used when you cannot swallow reliably, vomiting prevents oral medicines from working, symptoms require steady treatment, repeated injections would be uncomfortable, or absorption by another route is unreliable. A syringe pump does not automatically mean that medicines have failed or that death will occur within hours. It provides a reliable route for treatment and should be regularly checked and reviewed. Accessible care remains essential You should receive information in a form you can understand and use. This may require professional interpretation, British Sign Language support, easy read information, large print, communication aids, additional time, reasonable environmental adjustments, and involvement of someone you choose. A disability, learning disability or communication need should not be used as a reason to exclude you from planning or provide lower quality care. Ask who is coordinating your care Several teams may be involved. You should know who is the lead professional, which service provides routine review, who manages prescriptions, who should be contacted out of hours. Which team holds the current care plan, how information will be shared, when specialist advice should be requested, and who supports family or carers. Unclear responsibility can lead to missed medicines, repeated assessments and avoidable admissions. Request a palliative care review when support is insufficient You can ask your GP or clinical team whether palliative care would help when symptoms are affecting daily life, you want to discuss future care, treatment burden is increasing. You or your carers need more support, you have frequent hospital admissions, several teams are giving conflicting advice, your condition is progressing, or you are uncertain whom to contact. You do not need to wait until the final days to ask. Local services and procedures differ Palliative services, hospice eligibility, out of hours care and home support arrangements vary across the UK. This lesson cannot provide an individual medication plan or replace advice from the clinicians responsible for your care.

Palliative care adds another layer of support around you. It connects treatment of the underlying condition, relief of symptoms, psychological and emotional support, social and practical help, spiritual, cultural and personal priorities, support for family and carers, and planning for future changes. The balance between these elements changes according to your needs and goals.