Palliative medicine: overview
Palliative medicine is a medical speciality that aims to provide fully holistic care to those with life-limiting illness, throughout their time with that illness. The focus is on quality of life rather than simply its prolongation. This is achieved through excellent symptom control, for symptoms including pain, nausea, breathlessness, and many more; and extends to spiritual, social, and psychological care and care of the relatives of the patient too. Palliative medicine also provides individualized patient care at the end of life. The speciality was originally associated with cancer care, but in fact the specialty cares for anyone with a life-limiting illness regardless of underlying aetiology. All acute hospitals have palliative care teams, but the specialty is mainly based in the community providing both inpatient care in hospices and community services, allowing patients to be cared for at home if they choose.
The palliative care team
Palliative care teams are truly multidisciplinary. In a hospice, the MDT will often consist of most of the following:
• Medical staff
• Clinical nurse specialists
• Inpatient nursing staff
• Physiotherapist
• Occupational therapist
• Psychologist
• Chaplain
• Social worker
• Benefits/advocacy specialist
• Bereavement team.
Honours
Good palliative care introduced early helps patients live longer and better.
The SUPPORT trial, published in the New England Journal of Medicine in 2010, randomized 151 patients with newly diagnosed, metastatic non-small cell lung cancer to standard care, or standard care plus an early review by a palliative care team. Not only did the patients who received a palliative care review have better symptom control and quality of life scores, they also lived longer (11.6 months vs 8.9 months, p = 0.02).
In the hospital
The palliative care team usually reviews and advises on the management of patients being looked after by other clinicians. The team are experts in holistic care including symptom control and end of life care. They routinely have excellent communications skills and are often asked to help discuss difficult aspects of care with patients and their families. During your training, you will witness sensitive conversations that have not been handled as well as they could have been—watching the palliative care team is a great opportunity to see these conversations done well. Try to reflect on the differences between those you see which went well and those that you felt did not.
Trivia
The first modern hospice was St Christopher’s, founded in 1967 in Sydenham, London, by Dame Cicely Saunders. Originally training as a nurse and then as a medical social worker, Dame Cicely then trained as a physician and spent a career focusing on the care of the dying. She founded St Christopher’s with the aim to provide excellent clinical care alongside research and education. She died in 2005 in the hospice she helped to found.
In the hospice
Hospices are the specialist inpatient units for palliative care. The most common reason for admission is for symptom control, where there has been a symptom that has been difficult to control at home. Once the symptom is under better control, the patient will be discharged home again. Patients are also admitted for end of life care. Some people choose to die in the hospice, while others require admission because it is no longer possible to meet their care needs in their current location. Finally, hospices sometimes offer respite admissions for patients, while their family or carers may be away for example. Most hospices also run a ‘day hospice’. This is an area where patients can come 1 day a week and access hospice services such as psychology or physiotherapy, often while giving respite to carers.
What to do in the hospice
Try to spend time with the more senior hospice doctors and watch them clerk if you can. Pay attention to the way they ask some of the more sensitive questions during the consultation. Learning how to discuss a prognosis, do-not-resuscitate (DNAR) forms, and ceiling of treatment decisions with patients and their families is a career-long process, but get a head start by watching hospice clinicians who have these conversations every day.
In the community
Community palliative care teams are often based in hospices, but can be based on their own in some areas. It is in the community that the bulk of patients known to palliative care are cared for. This care is rarely delivered on its own; rather, the specialty works in close quarters with GPs and district nursing teams as well as other community services, e.g. community matrons or community outreach teams.
Cases to see
In hospitals, patients receiving palliative care input are nearly always under the care of a primary clinical team related to the underlying diagnosis. Try to see a hospice MDT in action. These will be much more holistic than in most other settings and you will notice that the most significant discussion will not be led by the doctors, but instead the nurses, social workers, psychologists, and chaplaincy.
Palliative medicine: symptom control
Palliative care is focused on providing holistic care to patients with life-limiting illnesses. It is far more than the management of specific medical issues, just as patients are much more than a collection of symptoms and conditions. Care therefore is multifaceted as described below:
Symptom control
The focus of palliative care is to try to improve the quality of life of the patients in whichever way the patient feels is important to them. One major way this is achieved is through the relief of unpleasant symptoms. The first symptom people tend to think of is pain, but others such as breathlessness, N&V, constipation, or anxiety can be equally debilitating.
Pain
This is a common symptom experienced by patients with many conditions. There are many possible ways to control pain and it is important to take a full history to try to identify the nature of the pain the patient has. It is important to note that they may have several different pains at the same time, e.g. a neuropathic pain in distal limbs from chemotherapy, a visceral pain from a specific tumour, and liver capsular pain from liver metastases. Analgesia (pain relief) needs to be tailored to the pain, or pains, the patient is experiencing. The choice of treatment should relate to the underlying cause of the pain. Some causes of pain can be better treated for the long term in a non-pharmacological manner, e.g. painful bone metastases can respond very well to radiotherapy.
WHO analgesic ladder
The WHO has developed a three-step ladder for prescribing in cancer pain:
• Level 1: non-opioids (aspirin and paracetamol) ± adjuvant.
• Level 2: mild opioids (codeine) ± non-opioid ± adjuvant.
• Level 3: strong opioid (e.g. morphine) ± non-opioid ± adjuvant.
The use of adjuvants will be determined by the type and cause of the pain experienced by the patient.
Nociceptive pain
This is a common type of pain associated with the activation of nociceptors in different organs and tissue throughout the body.
Neuropathic pain
This is pain that derives from damaged nerve fibres and can be difficult to treat with simple analgesia and opioids alone. It can be caused by direct invasion of nerve fibres, compression of nerve roots, or systemic causes for nerve damage such as chemotherapy.
Often it is necessary to start targeted neuropathic agents to help control it, such as gabapentin and pregabalin.
Incident pain
This pattern (rather than type) of pain can be challenging to manage as it is transient in nature and only present in certain circumstances. Commonly it is voluntary movement related. Quick-acting opioids such as sublingual fentanyl can help manage this if given prior to known triggers—such as dressing changes, personal care, and toileting.
Honours
Total pain
The concept of total pain is important in palliative care. Dame Cicely Saunders recognized that pain is often far more complex than a simple visceral event. Taking a thorough history can identify other sources of distress for the patient such as spiritual, social, or psychological pain and these can all influence the patient’s overall (total) experience of pain. Addressing these other important factors via the MDT may provide much more effective reductions in pain than simply 
opioid doses.
Nausea and vomiting
These are often thought of as vomiting being an extension of the nausea, but it is possible to have vomiting without protracted nausea and so they should be thought about separately. When taking a symptom history for nausea, it is important to try to identify the underlying cause. Some causes are reversible and the most effective relief of the nausea can be achieved through direct management of the cause, e.g. dexamethasone to reduce raised intracranial hypertension.
Antiemetics
These have different physiological mechanisms and it is good to initially try to match the mechanism of action to the underlying cause of the nausea. For example, metoclopramide promotes gastric motility and can be useful when there is delayed gastric emptying. Most antiemetics were not originally developed as such, some are antihistamines and others older typical antipsychotics. For example, haloperidol is a potent antiemetic, particularly useful for opioid-induced nausea—if you see this on a drug chart it is not because the clinicians think the patient is psychotic. Commonly prescribed antiemetics include metoclopramide, cyclizine, haloperidol, and levomepromazine.
Breathlessness
This can be an extremely debilitating and unpleasant symptom. As with other symptoms, there are a range of pharmacological and non-pharmacological management strategies. Acute and chronic breathlessness can have both physical and psychological causes and consequences and so, as with everything in palliative care, it is important to address the underlying exacerbating factors, wherever they may lie. Examples include correcting a severe anaemia or draining a malignant pleural effusion. For patients without easily reversible causes, many find opioids helpful and there is good evidence for opiate use for breathlessness. In addition, there is a role for benzodiazepines. The short-acting benzodiazepine lorazepam quickly dissolves under the tongue and has a short half-life making it very good at helping to manage acute episodes of breathlessness, or related panic attacks. Non-pharmacological interventions that help include providing an airflow, through an open window or the use of a fan for example, and are also evidence based. Breathlessness support groups are often run in hospices by physiotherapists and give patient other practical ways of managing acute episodes. Simply telling someone who is experiencing a panic attack to slow their breathing down is unlikely to work, try telling them to concentrate on breathing out slowly. Oxygen can be helpful too, but much less often than some might imagine. In addition, the practicalities of arranging oxygen to be delivered to a person’s house can delay discharge and so need to be thought about in advance.
Anorexia
This is common in most advanced illnesses. Encourage frequent, small meals. Review medications that can cause nausea or anorexia, e.g. opiates. Provide good mouth care and inspect regularly since there are often mouth ulcers or oral candida that can be missed.
Constipation
Bowel disruption is another very common problem with advanced illness. Constipation can be very uncomfortable and the pain can mimic more serious intra-abdominal pathology. Poor oral intake, immobility, weakness, and multiple types of medication are just some of the possible causes. Common in palliative care, the use of opioids is quite constipating and laxatives should be started at the same time—90% of patients on opioids will need a laxative. There are different classes of laxatives—osmotic, stimulant, faecal softeners, bulk forming—that can be used and it is good to have an understanding of their different mechanisms of action. Sometimes a more direct approach is needed and suppositories and enemas are used.
Diarrhoea
This can equally be distressing to patients and carers. The most common type seen is ‘overflow diarrhoea’. This is actually a symptom of constipation and the treatment is, slightly counterintuitively on first thought, laxatives. Sometimes it can be difficult to convince a patient of the need for laxatives in this situation. Often overflow is described as ‘gritty’ by the nurses. It is important to check for other causes of diarrhoea and so take a normal history as you would for a gastroenterology patient. Is there blood or melaena? Have they been on antibiotics recently? Are they on laxatives currently? If the diarrhoea continues to be a problem then sometimes drugs such as loperamide and codeine can be helpful.
Excess secretions
Use hyoscine butylbromide/hydrobromide, or glycopyrronium, usually subcutaneously but sometimes topical patches have a role.
Dehydration
Dying patients will inevitably drink less but may not feel thirsty. Good mouth care and keeping the mouth moist helps. The role of artificial hydration at the end of life should very much be decided on an individual patient basis.
Bowel obstruction
Predominantly found in malignancies that have areas of abdominal disease, worsening constipation can also be a sign of impending bowel obstruction. As you may imagine, this is an unpleasant condition, often marked with vomiting, abdominal distension, and pain. Some patients may be suitable for surgical intervention, but often this is not appropriate. In the acute phase, conservative management and bowel rest may be tried.
Sometime a trial of high-dose dexamethasone (6–16 mg/24 hours) may be helpful to try to reduce any oedema present. If this fails, the aim of care is to minimize the distress to the patient. Depending on the cause and the individual patient this may require a varying combination of analgesia, antispasmodics such as hyoscine butylbromide, antiemetics, and antisecretory agents that work in the bowel, such as octreotide. Sometimes a patient will benefit from a NG tube to help decompress the GI tract, but this is very much an individual decision.
Lymphoedema
While worldwide the most common cause is filariasis, in the UK the most common cause is secondary to treatment for cancers. Lymphoedema is the collection of fluid in the limbs due to a disruption of the lymphatic drainage channels, often following surgical dissection or radiotherapy. Lymphoedema is managed in specialist clinics which are often based in cancer centres or more commonly hospices. The primary aims of treatment are excellent skin care, exercise and movement, manual lymph drainage techniques, and support bandaging.
Itch
A complex and deeply unpleasant symptom for some patients. There are many different approaches, many topical and skin related, others more systemic such as drug reactions (~30% of patients will itch with morphine—it is solved by rotating to another opioid). Look for changes in the skin—is it wetter or dryer than usual? Has it changed colour? If appropriate, try local methods first such as emollients. If these aren’t working then often more systemic methods are considered.
Spiritual care
Holistic care of the patient involves a broader focus than simply their medical condition. For many patients approaching the end of life, there can be religious, spiritual, or general existential questions and/or worries. A palliative care history should involve a spiritual assessment. Many patients like to have chaplaincy input during their admissions and without asking during the history you will not identify this care need. Some religions have specific requirements about care of the body after death, or timings of burials, and it is important to know this in advance. Spiritual distress is one of the dimensions of total pain (see 
p. 551).
Psychological care
Anxiety and depression are commonly underdiagnosed in both patients and their carers. It is important to explore a patient’s psychological state during a palliative care clerking. Often, if there are signs of depression, more formal exploration of this is required, including an evaluation of any suicidal ideation that may be present. Treating an undiagnosed depression can markedly help improve many other symptoms. Hospices often have clinical psychologists and counsellors on site and some hospices can offer an outreach service. Patients can often undergo a range of psychological interventions from counselling to cognitive behavioural therapy. Anxiolytics and antidepressants also have a role.
Family and carers
Good holistic care of a patient also involves looking after the needs of their family, those important to them, and their carers. They will have their own psychological, spiritual, and existential care needs. Psychological morbidity is extremely common amongst carers. Often carers feel left out of the medical process as all the attention frequently has been on the patient in busy clinics and their hospital admissions. This is a very important part of holistic care, not least because many patients are worried about their relatives, sometimes worried about the burden being placed on them, or possibly what will happen after their death. Special consideration needs to be taken when there are children involved. The palliative care MDT team is able to help with things such as creating memory boxes for children, helping with explanations about what is happening to a patient’s younger children, or liaising with a child’s school. This can help ensure the school understands what is going on and can monitor for behavioural changes and liaise with their own educational psychologists as needed. The hospice teams will often help with benefits, arranging the creation of wills and other important financial matters towards the end of life. They also not uncommonly help to arrange a wedding at short notice.
Bereavement care
Palliative care teams have access to bereavement care which concentrates on care of family and carers after a patient’s death. If a death has been particularly traumatic or difficult for a family member, it is good practice to let the bereavement team know so they can follow up the family appropriately. In some cases this will be with the help of the GP. Often hospices will have services of remembrance, commonly around times of year more focused around family. Relatives will return to remember their loved ones and benefit from the mutual support on offer. Many families return year after year. If you are in a hospice and one of these is held, then make an effort to see it. It highlights that our patients are people, not just collections of pathology.
Care of the dying patient
In hospital placements, you may well be attached to teams that are caring for actively dying patients and it is here you are more likely to learn the beginning of these skills. Good care at the end of a person’s life is important for both that person and their family. Family members will often remember the care their relatives received as they were dying for the rest of their own lives.
The aim of good end of life care is to provide only those interventions that are beneficial to the patient. Every patient is an individual and so all management at the end of life should be bespoke. This is achieved through the use of various medications used to respond to symptoms as they develop. This is often referred to as anticipatory prescribing. Typically they will be administered by the SC route as swallowing may be becoming more difficult or impossible.
The anticipatory medication is chosen using the same attention to underlying cause as in symptom control. If repeated doses are required, then often they administered via a continuous SC infusion, often called a ‘syringe driver’ that lasts for 24 hours. This allows for a constant dose of symptom-relieving medication to be administered via a reliably absorbable route. The doses are reviewed on a daily basis as the patient and their symptoms change, and this allows for responsive dose changes. Multiple medications can be combined in a single pump, and ‘as-needed’ doses can often be given through the same line if more modern connectors are used.
Terminal restlessness
This is sometimes seen in the few days before death. It is a heightened level of agitation in the days before death. This can be well controlled once recognized. It is important to differentiate terminal agitation from other cases of agitation such as urinary retention, or hypoxia, as these can often be more effectively managed in other ways, e.g. a urinary catheter.
Holistic review
Other important aspects when caring for a dying patient is to consider the interventions currently in place and use clinical judgement to decide whether they should be continued or altered. Some examples of this are non-invasive ventilation, antibiotics, artificial fluids, and nutrition.
There are no fixed rules on stopping interventions, rather each should be considered individually, and rationales discussed with the patient, or their family if the patient is unable to have these conversations. These conversation need to be undertaken with sensitivity, they are by their nature likely to be upsetting. Communication is not a one-off process. Rapport and effective communication will develop and continue over time.
Morphine shortens life—a medical myth
It is a commonly held belief among the general public and a significant number of health professionals that administering morphine in a palliative care setting shortens the patient’s life, usually through a suppression of respiratory drive.
This is a medical myth. Opioid prescribing as used by palliative care teams does not shorten life. Inappropriately large doses will do, of course, but appropriate dose titration and ongoing review will achieve good symptom control without shortening life.
In exams
Palliative care patients are rarely used for OSCEs and so the stations will normally have an actor/simulated patient.
Often they will focus on a specific area as taking a generalized history would take too long for a standard OSCE station slot. Communication skills are therefore often tested. The key is, as always, establishing rapport early, elicit the patient’s concern, and dealing sensitively with them.
Remember that silence can be extremely useful, especially if you are slightly unsure where to go next—the actor will often guide you if they feel you are genuinely listening. Another tip is to be careful with your active listening cues. Avoid getting into the habit of saying ‘good’ as a cue for example, as it makes you sound like you are not listening when the actor has just told you they have a terminal illness and are worried about dying!
Skills to practise
Communication is the most prominent skill in palliative medicine. It is through communication that the palliative care clinician elicits the symptoms, troubles, hopes, goals, and fears of their patients and their families.
Breaking bad news is a part of palliative medicine, although do not forget that the diagnosing and treating teams are the ones who tell the patient their diagnosis.