Changes in Symptoms
Being prepared for changes in symptoms and medication needs, goals and preferences will ensure effective medication management in the palliative phase.
- Non-essential medications continue to be given and these adversely impact the person’s quality of life.
- Anticipatory medications have not been prescribed.
- The residential aged care facility does not have a stock of medications required when the person’s needs change or is unable to access necessary medicines quickly from pharmacies.
- The person experiences unnecessary suffering because they are not given timely or adequate pain or symptom relief.
- Educate and empower staff about the goal of using medication including effective pain management in the palliative phase and foster dialogue across the multi-disciplinary care team.
- Review and rationalise medications where appropriate so that non-essential medications are discontinued.
- Follow a process and prompts to support anticipatory prescribing that keeps pace with the person’s changing circumstances.
- Seek feedback from a facility’s medication prescribers (local GP’s, Nurse Practitioners, attending doctors, pharmacists) to understand their experience and where improvements can be made.
- Undertake reflective practice to assess staff understanding and practices related to medication management at the end of life.
- Seek feedback from the person, or, with the person’s consent, their family and friends. If the person does not have capacity, seek feedback from their substitute decision-maker.
The goal of medications in the palliative phase is comfort and quality of life
Rather than trying to cure or ‘to make someone better’, palliative care medications are used with the intent to alleviate suffering, promote quality of life and comfort. Health professionals and care staff need to monitor whether the person is experiencing symptoms that are causing them discomfort or harm and explore options for responsive medication management with the person (or their family, friends, support networks, or substitute decision-makers, where appropriate).
Key considerations guiding medication management in the palliative phase may include:
- Reviewing and rationalising medications: if they are no longer providing benefits, are causing harm or contributing to adverse drug interactions they need to be stopped, reduced or changed.
- Anticipatory prescribing: in preparation for potential symptoms commonly experienced during the final stages of life such as pain, dyspnoea or shortness of breath, agitation, nausea/vomiting, excessive secretions; constipation; breathing difficulties; delirium, fatigue; anxiety and emotional distress.
- Withholding or withdrawing life-sustaining treatment, including futile or non-beneficial treatment.
- Effective pain and symptom management throughout the palliative phase and particularly in the final days of life.
These considerations are covered in greater detail below.
Medication may need to be reviewed and rationalised (deprescribing)
People in aged care often take five or more medications (known as polypharmacy) because of chronic conditions requiring multiple medications to prevent or control symptoms. Taking so many medications can impede quality of life through adverse drug effects and drug to drug interactions.14
Consideration needs to be given to whether each medicine is essential to maintaining current wellbeing or preventing symptoms and if any are non-essential or inappropriate for the palliative phase. For example, drugs like statins which aim to prevent long-term cardiac or neurological events 15 may not be appropriate. Important factors to consider in reducing or eliminating medications (also known as deprescribing) include:
- the person’s care goals and preferences in the context of life expectancy, quality of life and functional status
- which medications are essential to maintain current wellbeing
- whether any medications might be non-essential or inappropriate for their stage of life
- the advantages/disadvantages (i.e. disease-specific benefit–harm thresholds) of discontinuing any non-essential/inappropriate medication.
Clear communication about the choices, benefits and risks of deprescribing are essential to enable the person (or where appropriate, their substitute decision-maker) to make informed decisions and to support conversations about medication management.
Benefits associated with ceasing non-essential or inappropriate medications during the palliative phase include:
- appropriateness of the medication for the stage of life
- reducing risk of falls
- improving or preserving cognitive function
- reducing risk of hospitalisation from drug-to-drug interactions.
There may be concerns when long term medications which have been emphasised as essential, are ceased. This may be perceived as a sign of ‘giving up’ and imminent death. It is important to reassure the person and their family that stopping these medications is not intended to hasten death or decrease the quality of care. The limited benefit of continuing long-term medications in the last days of life should be explained and reassurance given that medications can be prescribed to relieve pain and symptoms that may emerge.
Anticipatory prescribing is important
Anticipatory prescribing is the practice of prescribing medicines in advance of anticipated symptoms or to avoid crisis (e.g. urgent hospital transfer).16 Evidence shows this practice provides reassurance, effectively controls symptoms and helps improve a person’s ability to achieve their preferred place of death, and positively impacts family and carers.17
Anticipatory prescribing for aged care residents in the palliative phase assists with:
- effectively responding to symptoms associated with rapid deterioration and end of life
- reducing the risk of uncontrolled and breakthrough pain
- avoiding inappropriate or unnecessary transfers to an acute care setting.
Ensuring medications are on hand
Some providers will have an imprest medication system: a stock of medications that are not supplied on prescription for a specific person, but which are obtained by an establishment under the authority of a Health Services Permit (HSP).
The provider can choose the number and type of medications appropriate for residents in that facility. Medications may include pain relief, sedation or other end of life medications that residents may require urgently.
Learn more about Imprest Medication Systems: Southern Metropolitan Region Palliative Care Consortium – Imprest Medication Systems for RACFs.
Anticipatory prescribing will be impacted if the residential aged care facility does not have medication stock readily available when the person needs them or cannot quickly access medications via a local pharmacy.
Withholding or withdrawing life-sustaining treatment, including futile or non-beneficial treatment
A person with capacity may decide at any time that they do not want to start or continue treatment or medication. If the person does not have capacity, they may have an Advance Care Directive that refuses treatment, or their substitute decision-maker may refuse treatment. Such a decision should be respected, and the treatment or medication withheld or withdrawn, even if the person will die without it.
In the final weeks, days and hours of a person’s life, a person’s health professionals may decide that continuing existing treatment (including medications needed to keep the person alive) or initiating curative or potentially life-prolonging treatment is futile or non-beneficial (i.e. it is of no benefit, or is not in the person’s best interests). Consent to withhold or withdraw futile or non-beneficial treatment is not required, except in Queensland where the person does not have capacity. However, it is good practice for health professionals to engage in shared decision-making with the person (or their substitute decision-maker if the person does not have capacity) and their family, friends and support network (if the person consents) prior to withholding or withdrawing treatment.
A person or their substitute decision-maker cannot demand that medication or treatment considered futile or non-benificial be continued, and health professionals have no legal obligation to provide it. Any reasons for ceasing medications should be clearly documented to prevent other prescribing health professionals, such as after-hours staff or locum GPs, re-prescribing them.
Appropriate pain and symptom relief should continue to be provided up until the person’s death - even where other medications and treatments are stopped - to ensure the person remains comfortable.