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Palliative care

Caring for palliative care patients at home: medicines management principles and considerations

Pharmacists need to understand the range of medicine support that they and their teams can provide to palliative care patients and their caregivers.

Caring for palliative care patients at home

Source: Shutterstock.com

Pharmacists have a duty to support patients and carers with understanding treatments, while liaising with other healthcare professionals to improve patient access to care

Palliative care is defined by the National Institute for Health and Care Excellence (NICE) as the active holistic care of patients with advanced, progressive illness, where the management of pain and other symptoms — and provision of psychological, social and spiritual support — is paramount[1]. With many aspects of palliative care being applicable earlier in the course of illness, the main goal is to achieve the best quality of life for patients and their families[1].

Policy and commissioning drives are required to support excellent care for all patients, including those being cared for and dying at home[2]. This is assumed to be the preference for the majority, but may not be appropriate for all[3],[4].

Patients and family caregivers require appropriate, tailored and rapid access to end-of-life care, along with support to better manage medicines, including those prescribed to help control pain. The needs of terminally ill patients are unpredictable and can change quickly, with a suitable response requiring a multidisciplinary approach. 

Community pharmacists have mainly been involved in medicine supply; however, the greater involvement of pharmacists in direct patient care — including identifying carers and family members who can be responsible for care, counselling on medicines use for seriously ill patients who may be housebound, and liaising with other health professionals about prescribing changes (e.g. deprescribing and use of anticipatory medicines) close to the end of life — can reduce pressure on GP services and increase patient access to care.

This article considers how pharmacists can better support terminally ill patients, as well as the family caregivers who support them, to manage medicines at home by examining the challenges they face and outlining how medicines optimisation principles can be applied in practice.

Supporting patients and families at the end of life

Patients and family caregivers often find it hard to cope with rapidly changing symptoms and associated prescription changes. This may be particularly evident in the last days of life, where pharmaceutical care needs relating to timely supply, advice on anticipatory medicines and managing symptoms can become more pressing[5].

Effective communication with patients, alongside collaboration with care providers, is central to achieving medicines optimisation. Pharmacists should be able to have ‘difficult conversations’ with patients and family caregivers about end-of-life care; however, foreseeing when and how to initiate these discussions can be challenging (see Box 1)[6]. Currently, most community pharmacists have limited interaction; are not formally integrated into the multidisciplinary team; or are not appropriately trained to fully contribute to palliative patient-centered care, despite these goals being easily accessible[7]. The following sections outline how and when medicine support may be required, alongside practical steps community pharmacists and their teams can take to deliver supportive care.

Box 1: Communication principles for open discussions about end-of-life care with patients, carers and their families

Communication about end-of-life care should be open, honest, sensitive to the situation, commenced early and continued through the patient’s journey.

The aims of these discussions include:

  • Eliciting the patient’s level of understanding — their main problems with or concerns about their medicines (especially those that are anticipatory), and the physical, emotional or social impacts these are having on the patient;
  • Determining how much information the patient wishes to receive and providing this to ensure medicines optimisation;
  • Ascertaining whether the patient wishes for more support to engage in medicines management or end-of-life conversations with other family members or carers, and responding to these needs as necessary[6].

Opportunities for pharmaceutical care

NICE guidelines state that pharmacists should be able to recognise when a patient may be in the last days of life and provide advice and support to the patient, family caregivers and healthcare professionals[8]. Pharmacists should be able to advise on the use of anticipatory medicines (e.g. ‘just in case’ medicines; see Box 2) and, when appropriate, ensure that sufficient stocks of these are available[9],[10],[11]. Shared decision-making and being mindful of cultural, religious or spiritual preferences should underpin the advice given and pharmacological interventions provided (see Table 1).

Box 2: ‘Just in case’ boxes

Many areas of the UK have implemented ‘Just in case’ box initiatives to support anticipatory prescribing, where dispensed medicines are stored in a readily identifiable container along with the appropriate equipment and documentation to facilitate prompt administration if symptoms develop[10].

Typical contents include:

  • Anticipatory medicines for subcutaneous use (including diluent);
  • Needles and syringes;
  • Prescribing guidance;
  • Authorisation to administer medication document;
  • Patient and carer information leaflet;
  • Contact details for advice[5].

Procedures (e.g. record keeping and regular communication with prescribers and care homes) should be established to minimise and recognise the risk of medicines being unlawfully diverted[11].

The prescriber must accept responsibility and be mindful that the availability of medication does not replace the need for clinical assessment when the patient’s clinical condition changes. They must:

  • Agree the list of anticipatory medicines locally with main stakeholders;
  • Reduce the risk of prescription errors by agreeing the recommended starting doses and making them readily available to prescribers on pre-printed sheets;
  • Balance the quantity supplied between adequate supply and potential waste;
  • Include equipment and documentation to facilitate the administration of medicines;
  • Be confident that the patient and carers understand the rationale for placing medicines in the home;
  • Ensure all healthcare professionals involved in the care of the patient are aware of the clinical situation and the availability of anticipatory medicines, including those providing the out-of-hours services[10].
Table 1: Examples of pharmacological interventions at the end of life
Symptom management at end of lifePharmacological intervention and considerations
Managing pain
  • Following discussion with the patient/carer, if the pain is identified, initiate a discussion with the prescriber about optimal management;
  • Ensure the medicine selected is appropriate for the severity of the pain;
  • Advise patient or carer to monitor breakthrough pain episodes. Ensure appropriate extended-release formulations are prescribed and counsel on correct use;
  • Consider non-pharmacological pain management options.
Managing nausea and vomiting
  • Determine the cause through discussion with patient or carer;
  • Ensure medicines are prescribed when necessary and counsel on suitable antiemetic use;
  • Ask the patient or carer to contact the pharmacist after 24 hours to update on progress. Contact the prescriber if substitution or additional antiemetic is required;
  • Consider non-pharmacological management (e.g. taking prescribed medicine with food).
Managing anxiety, delirium and agitation
  • Determine the cause of anxiety or delirium;
  • Consult the patient or their GP about treatment options (e.g. discontinuation or change of a medicine);
  • Review dose and frequency according to levels of patient distress and response.
Managing respiratory secretions  
  • ‘The ‘death rattle’ is a distinctive sound a person may make as they are coming to the end of life, as they may no longer be able to swallow or cough effectively enough to clear their saliva. Reassure family members that although the noise can be distressing, it is unlikely to cause discomfort;
  • If a medicine is indicated, periodic review for efficacy and adverse effects is needed. Some non-pharmacological advice may also be appropriate (e.g. patient repositioning [repositioning the patient from side to side in a semi-upright position is recommended as a nursing strategy for patients with terminal secretions]).
Other symptoms
  • Invite the patient to discuss other symptoms that may have arisen, such as anorexia or cachexia (i.e. wasting of the body), fatigue, constipation, diarrhoea, oral health issues, depression and difficulty sleeping;
  • Discuss solutions and offer advice to the prescriber or appropriate healthcare professional;
  • Encourage adequate hydration by advising family caregivers to support the dying person to drink if they wish to and are able to.
Rational use of medicines and deprescribing
  • Where appropriate, and in discussion with the patient or family caregiver and prescriber, explore stopping previously prescribed medicines that are not providing symptomatic benefit (e.g. if the patient is on a statin) or that may cause harm. 
Source: National Institute for Health and Care Excellence[8]

With counselling on dispensed medicines or through offering an advanced service (e.g. a medicines use review [MUR] or new medicines service consultation), patients and their families or carers can make informed decisions about their pharmaceutical care[6]

However, most seriously ill patients will have their medicines delivered or collected by family caregivers, reducing the extent to which medication review and support services are offered, as well as opportunities for patient-pharmacist interaction. Pharmacists need to ensure family or carers are supported to manage medicines. Where clinical interventions considered to be outside the pharmacists’ remit have been proactively discussed, referrals should be made to appropriate healthcare professionals.

Pharmaceutical care and COVID-19

Rapid guidance has been issued by NICE in response to COVID-19, prompting changes in how anticipatory medicines are prescribed and used[12]. Prescribers should consider the use of long-acting formulations, which can be administered by subcutaneous injection, buccally, sublingually or rectally, and that these may now need to be administered by family members[12]. This proposal will likely result in extending the role and responsibility of family caregivers in administering end-of-life care medicines, in relation to the type of drug and method of delivery.

It is the pharmacist’s responsibility to advise on the correct use of these medicines and to adopt strategies that ensure effective counselling can be undertaken where people are in isolation (i.e. via remote consultations). This should also be offered to those who are from marginalised groups, who may find accessing pharmacy services more challenging at this time[13].

Medicines optimisation

Pharmacists should actively support patients to take their medicines as intended by discussing their medicines use, and any concerns and questions they may have. They should also provide advice on the management of multimorbidities and polypharmacy[14],[15].

In managing the care of patients at the end of life, clinical decision-making may become more complex as new symptoms develop and become more prevalent, and this can be emotionally distressing for families and carers. Regardless, pharmacists must take into account the law, ethical considerations and relevant factors related to the surrounding circumstances. Support on exercising professional judgement can be found in Medicines, Ethics and Practice and in the Royal Pharmaceutical Society’s guidance on ethical and professional decision-making during the COVID-19 pandemic[16],[17].

The patient should remain the first concern and pharmacists must ensure that they can justify their decisions. Where appropriate, a written record of the decision-making process and the reasons leading to the course of action taken should be kept (e.g. in the patient records or a shared work diary).

There are four principles which should be employed to ensure patients get the best possible outcomes from their medicines[18]:

1. Aim to understand the patient’s experience

  • Encourage patients and carers to express their views, experiences and concerns in an open manner;
  • Ensure there is an ongoing two-way process to elicit patients’ choices as they progress through different phases of their illness;
  • Use active listening to understand the patient’s/family’s experience of specific medicines (i.e. concerns about side effects, dislike of certain medicines/formulations) and respond constructively;
  • Ensure patients’ preferences are understood and shared-decision making is implemented.

2. Evidence-based choice of medicines

  • Medicines regimens should be regularly reviewed to ensure they remain clinically appropriate, cost-effective and meet the needs of the patient;
  • Identify medicines that are no longer necessary and can be stopped as symptomatic treatment progressively takes precedence.

3. Ensure medicines use is as safe as possible

  • Consider safety (e.g. side effects, interactions and safe processes for handling);
  • Medicines in palliative care carry significant potential for harm if mishandled or not used as advised (e.g. controlled drugs or injectable medicines);
  • Engage patients and carers to improve health literacy. This can ensure that harm or an unnecessary incident does not occur and that the patient feels confident using their medicine.

4. Make medicines optimisation part of routine practice

  • If patients are homebound, call them routinely to enquire how they are;
  • Effective medicines optimisation requires routine discussion and collaboration across professional boundaries; however, patient permission should be obtained before sharing information between services[18].

Insights from the ‘Managing medicines for patients with serious illness being cared for at home’ study

This three-year qualitative investigation examined how patients and family caregivers coped with managing medicines at home, how they felt about doing this, and how they were supported by different healthcare professionals and services[19]. There were three main themes applicable to community pharmacists that emerged.

1. Help is required to enable patients to manage their medicines at home

Patients were found to be managing complex medicines regimens at home with little support or guidance on their use[19]. Prescribing changes often become more frequent during the end-of-life stage and family caregivers may become anxious or confused if they are not properly informed and supported, resulting in potential non-adherence and medicine waste. This may be partly mitigated using dosette boxes; however, doses can change more frequently than on a weekly basis. Advice on how to manage liquids, creams, patches and ‘when required’ doses will also need to be discussed with the patient and carefully monitored by the pharmacist to ensure medicines are used appropriately[20].

Improved support and management can be achieved by:

  • Making patients and family caregivers aware that pharmacists can be approached for help and advice about medicines;
  • Providing patients with accessible written and verbal information about what their medicines are for and how to take them — especially in relation to pain relief;
  • Suggesting alternative routes of administration, where appropriate (e.g. a move to liquid formulations);
  • Providing multicompartment compliance aids to clarify what tablets a patient should take and when; review their use on refill to ensure medicine adherence;
  • Informing patients and carers when a tablet changes in size, shape or colour — these small changes were responsible for much confusion and anxiety in the study;
  • Keeping adequate stocks of palliative care medicines in the pharmacy — for example, various formulations of fentanyl and morphine for pain relief, and midazolam to manage confusion or restlessness;
  • Rationalising the use of medicines or deprescribing, where appropriate[21],[22],[23].

2. Diversity and disadvantage

Emerging evidence suggests that patients from marginalised groups may have greater unmet palliative and end-of-life care needs[24]. The study outlined how community pharmacy can improve the care delivered to people from diverse backgrounds to ensure optimum use of their medicines and avoidance of adverse effects[25],[26]. Groups requiring additional support include:

  • Those with disability, including people with physical disability; visual impairment; hearing impairments or learning impairment;
  • Those from black, Asian and minority ethnic communities and whose first language is not English;
  • Those from Gypsy, Romani and Traveller communities;
  • The homeless or those with no fixed address;
  • Refugees or those seeking asylum;
  • Those with mental health and stigmatised medical conditions (e.g. HIV);
  • Those from rural communities;
  • Those with alcohol/drug dependency;
  • Those with poor literacy[27].

3. System complexity for patients

Complexity — especially when patient care involves a large number of professionals from different services — is challenging to coordinate and manage. In the study, patients sometimes felt frustration with a complex system that they viewed as being fragmented and bureaucratic[19]. Pharmacists should facilitate and offer navigational support to signpost to appropriate healthcare professionals or care agencies, particularly in a crisis.

As a patient’s health deteriorates, they gradually relinquish responsibility for medicines management, even to the point of requiring physical assistance with the administration. Pharmacists should work closely with family caregivers to maintain the quality of care and safety of medicines, and be mindful that family caregivers can be in poor health themselves.

Better communication, such as regular phone calls between healthcare professionals and with families — especially GPs and pharmacists — is important to enable effective continuity of care.

Improving awareness of pharmacy support

Patients and families are often unaware of the help and support the pharmacy team is able to provide. A poster can be a simple and effective way of outlining what pharmacy can offer and could be displayed in the pharmacy or local GP surgery, with smaller versions inserted in dispensed medicine bags (see Figure).

A patient may ask the following questions, which can provide pharmacy teams with opportunities to facilitate better patient care:

  • “Why have I been given this medicine?”
    • Ask the patient what conversations they have had with the prescriber and check their understanding of why this medicine has been prescribed;
    • Explain what the medicine is used for. Explaining how the medicine works and why it is needed can help ensure patients feel comfortable with the prescribing decision.
  • “Why have my medicines been changed?”
    • Discuss the patient’s condition and how it is managed;
    • If a medicine has been changed, explore the reasons why this change has occurred and communicate this to the patient (e.g. has there been a GP practice formulary change? Did the patient report a side effect? Are certain medicines more or less appropriate for the patient?).
  • “What if I miss a dose?”
    • Explain what the patient should do in this circumstance;
    • Advise the patient or carer to check the patient information leaflet, as this typically has information relating to missed doses;
    • Remind them that you or the pharmacist on duty are available to answer questions, and that they may see you or telephone you during opening times.
  • “Do I have to take them all?”
    • Explaining the rationale behind a dosage regime can alleviate concerns (e.g. the need for several prednisolone tablets as a daily dose);
    • Consider offering an MUR where available and when more detailed discussions are warranted.
  • “I’m finding my medicines difficult to take?”
    • Try to understand the reason. Is the cause mechanical (e.g. they are unable to open the packaging), a scheduling issue (e.g. they are struggling to access their medicines at night) or physical (e.g. is the medicine too large to swallow)?;
    • Explore intentional non-adherence issues (i.e. aversion to taking medicines);
    • Once this is understood, make recommendations on how to best manage the individual issues.
  • “Where should I keep my medicines?”
    • Advise the patient on the appropriate location to store their medicines and that they can read the patient information leaflet for directions.

The case-based learning article, palliative and end-of-life care in community pharmacy, outlines how pharmacists can assist patients nearing the end of life with the management of pain, nausea and constipation, and anticipatory prescribing[28].

Palliative care poster

Figure: Palliative care poster

Source: BMC Palliative Care[19]

This poster was co-produced by patient-professionals from the ‘Managing medicines at home’ study. It can be displayed in pharmacies to engage patients and facilitate access

Multidisciplinary collaboration

Limited access to medical records, lack of remuneration and limited integration within the multidisciplinary team are barriers to collaboration[7].

However, several projects have promoted greater integration and demonstrated that clinic-based, hospice and home medicine support is feasible and can help patients with complex palliative care needs[29],[30],[31],[32],[33]. Pharmacy inclusion in palliative care services can be improved by:

  • Engaging with quality improvement audits and reviewing and actioning outcomes. For care pathways, the aim is to enable more efficient information exchange between healthcare professionals;
  • Delegating routine work to other pharmacy team members to allow for greater clinical input for patients with palliative care needs;
  • Promoting pharmacy as a ‘medicines information hub’ for other healthcare professionals, patients and family caregivers;
  • Investing in wider staff training to enable them to effectively engage with palliative care patients and their families;
  • Exploring the role of independent prescriber pharmacists, tailored for the appropriate and timely supply of anticipatory medicines in palliative care.

For a summary of best practice principles for community pharmacists, see Box 3.

Box 3: Best practice

Community pharmacists should undertake the following responsibilities to ensure the best possible care for palliative patients:

  • Act as a central point of contact and provide information about medicines to patients and their carers;
  • Provide adherence aids (e.g. reminder charts) and patient information sheets about medicines that are used in palliative care;
  • Provide advice to patients receiving palliative care and their carers post-discharge from hospital. This could be a useful trigger to ensure patients are aware of the pharmacist and are able to ask for advice to manage any changes that may have been made;
  • Recommend the discontinuation of long-term medicines that are not needed during palliative care;
  • Discuss changes to medicines with the multidisciplinary team, and provide prescribing advice and medicines information on complex medication issues (e.g. medicines compatibility with syringe drivers).

Authors and affiliations

Asam Latif is a senior research fellow at the University of Nottingham, UK; Christina Faull is a consultant in palliative medicine and research lead at the LOROS Hospice, Leicester, UK. Abid Ali is a clinical academic pharmacist at the University of Nottingham; Eleanor Wilson is a senior research fellow at the University of Nottingham; Glenys Caswell is a senior research fellow at the University of Nottingham; Claire Anderson is head of the School of Pharmacy at the University of Nottingham; Kristian Pollock is professor of medical sociology at the University of Nottingham.

Citation: The Pharmaceutical Journal DOI: 10.1211/PJ.2020.20207954

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