Navigating the last days of life:
a general practice perspective

Facilitating a "good death" in the community

Death is the inevitable closing chapter in a person’s life. There are countless narratives that can lead people to this destination: for some, the possibility of death has been long anticipated due to chronic illness, whereas others may face it unexpectedly.

The term “last days of life” specifically relates to the period of time in which death is considered imminent (Figure 1).¹ Given the unpredictable nature of human perseverance and diverse pathways leading to death, the duration of this period can vary, and may be measured in hours or days.¹ For many, the concept of having a “good death” is highly dependent on how the last days of life unfold, and the manner in which a person dies often persists in the memories of those left behind.²

End of life care should ideally be delivered as part of a multidisciplinary clinical service.³ In New Zealand, an estimated 31% of people die in residential aged care facilities and 22% die in private residences.⁴ In these situations, general practices may be tasked with helping people and their family/whānau navigate the last days of life; either as the primary provider of end of life care services or in collaboration with a multidisciplinary team.⁴ The general practice team will often work closely with district nurses, aged residential care facility staff, hospice services and in some cases, ambulance services, when providing end of life care.

General practitioners, nurse practitioners and practice nurses are already integrated into the pathways that lead to end of life care; they are often familiar with the patient’s history, provide clinical care and support throughout their lifetime and are well positioned to identify those with a life-limiting illness (particularly as people begin seeking more regular care). As New Zealand’s population ages, the role of the general practice team within this process will inevitably increase. Terminally ill people should be provided with a consistent standard of care, however, there are considerable challenges that primary care health professionals face when trying to provide end of life care in the community, including:⁵

• Funding and resource limitations
• Capacity and time constraints
• Access to training and guidance

New Zealand-specific guidance is now available

In 2017, “Te Ara Whakapiri: Principles and guidance for the last days of life” was published by the Ministry of Health (Manatū Hauora) providing a uniquely New Zealand perspective to guide best practice care of people in their final days of life.¹ Specific aspects of this work were updated in 2020.⁶

Te Ara Whakapiri details essential components and considerations, flowcharts and checklists, for providing quality and consistent care for adults in their last days of life, regardless of the setting, e.g. home, a residential care facility, hospice or hospital.¹ It also outlines various overarching principles relating to the delivery of end of life care and the health system(s) facilitating this.¹ While certain concepts are dependent on health policy and system-level action, those most relevant to primary care professionals include that:

• Care should meet the individualised needs of the person and their whānau.¹ People in their last days of life may experience physical discomfort, in addition to psychosocial and spiritual distress; factors that are often interconnected.⁷ However, no two journeys leading to the last days of life are the same. Each person’s unique background gives rise to diverse perspectives, challenges and coping abilities. The universal principles of Te Whare Tapa Whā (Figure 1) can be used as a framework to guide and deliver individualised care across all dimensions of a person’s wellbeing.^{1, 8}
• All information relating to the status of people in their last days of life, their care plan and treatment should be communicated clearly and respectfully.¹ Shared decision-making should always be considered; care providers must actively seek input from the person and their family/whānau and create opportunities for them to provide feedback.¹ For further information, see: “Tips for communication with family/whānau”.
• Details of conversations and decisions should be documented and considered in the context of any existing advance care plan or advance directive(s).¹ See: “A reminder to think ahead: advance care planning”.
• Family/whānau should also be supported. It is important to pre-emptively discuss with the family/whānau their role, including how they can be involved in care, potentially difficult decisions (e.g. relating to feeding and hydration, discontinuing non-essential medicines) and physiological changes to look for that may indicate impending death (so they can be prepared).¹ Following death, bereavement risk should also be considered, and support arranged if necessary (see: “Assessing family/whānau bereavement risk”).¹

---

Figure 1. The end of life and last days of life.
Adapted from Te Ara Whakapiri, Ministry of Health – Manatū Hauora.¹

Baseline assessment and establishing a care plan

The baseline assessment provides an opportunity to comprehensively evaluate the needs of the patient (Figure 2); if these needs exceed the resources or capacity of the primary care provider, the patient should be referred to a specialist palliative care service.¹

---

Figure 2. General overview of a baseline assessment for people in the last days of life.^{1, 10, 11}

Recognising that a person is dying

Clinical judgement and experience is used to determine when a person is approaching the last days of life.¹ However, recognising this transition can be a significant challenge regardless of the care setting as:^{1, 10, 11}

• Symptoms and signs can be subtle and may vary depending on the patient’s underlying condition(s), e.g. profound weakness, changes in respiratory patterns and mental state, reduced food/fluid intake (see Figure 2 for a comprehensive list)
• Clinical deterioration may also indicate a life-threatening but potentially recoverable condition, e.g. opioid toxicity, infection or hypercalcaemia. The decision to investigate or treat depends on individual clinical circumstances, patient/family/whānau wishes or advance directive(s).

As such, there is likely to be an element of uncertainty during this process. In general, the possibility of incorrectly identifying this transition is outweighed by the importance of facilitating timely/open discussions and redirecting care towards individualised comfort and support.¹ This also provides the person and their family/whānau with an opportunity to understand and process the possibility of imminent death.¹ End of life conversations can be difficult depending on the person’s history, cultural values, beliefs and attitudes, but are best facilitated using open and honest communication (see: “Tips for communication with family/whānau”).^{1, 2}

Determine roles and establish clear lines of communication

After determining that a person is likely to be in their last hours or days of life, a lead health practitioner should be identified/documented (if not already designated) and a clear process established regarding when and how to contact them.¹ Ensure contingencies are in place for support both within and outside working hours; a designated alternative contact should be identified, which may include services outside of general practice, e.g. secondary care, palliative care, district nurses, pharmacy, and in some cases paramedicine/ambulance services.

The lead health practitioner should in turn identify and document who the key spokesperson and/or first contact is from within the family/whānau, as well as whether there is an enduring power of attorney (and if this has been, or should be, activated).¹ Regular communication with nominated people is essential, particularly if care plan implementation takes place at home.

Assess the person’s physical needs

There are five main symptoms that need to be proactively considered for every dying person: pain, nausea/vomiting, dyspnoea (breathlessness), respiratory tract secretions and delirium. A physical needs assessment can help identify the priorities of care, providing practical information on which symptoms are most likely to cause the person discomfort and distress, and what additional assistance may be required.¹

This evaluation may consider:^{1, 10}

• Level of consciousness
• Pain severity and type. Consider physical signs of pain, e.g. facial grimacing, restlessness, tachycardia.
• Functional status, e.g. swallowing difficulties, balance problems and falls risk
• Skin integrity, e.g. pressure injuries, skin tears, skin dryness, ulceration, infections
• Gastrointestinal/genitourinary complaints. Nausea, vomiting and anorexia are common. Abdominal fullness may indicate constipation or urinary retention. Consider catheterisation if not already in place.
• Respiratory symptoms, e.g. dyspnoea, respiratory tract secretions, cough
• Neurological and psychiatric features, e.g. delirium (which may include agitation and terminal restlessness), confusion, insomnia, fear, anxiety/depression

Not all people in their last days of life are able to communicate information about their physical needs or goals; include family/whānau in discussions, if possible (particularly if they are the ones who will be primarily delivering care).¹

Discuss symptom management and prescribe anticipatory medicines

People in their last days of life can present with a wide range of symptoms that may change over time; this should be anticipated where possible and a management plan put in place.¹

Non-pharmacological management strategies should be used as much as possible, particularly if adverse effects of medicines are a concern or if people are wanting to “die a more natural death”.^{13, 14} Examples include setting up a comfortable environment/atmosphere, playing music, using relaxation techniques (e.g. deep breathing), and regularly repositioning the person if possible. However, pharmacological management is invariably required. Anticipatory medicine prescribing is usually implemented for people choosing to die at home to ensure carers can provide timely symptom relief without the need for in-person clinician assessment. Medicine regimens can sometimes be complicated as symptoms may occur concurrently, and the recommended medicines may have overlapping indications (e.g. opioids are used for both pain and dyspnoea),⁶ or interact (e.g. opioids and benzodiazepines may enhance analgesia but can also increase sedation).¹⁵

Other considerations for care plans in the community¹

• Discontinue non-essential medicines. Care in the last days of life should primarily focus on relieving symptoms and promoting quality of life. Therefore, continued use of medicines for managing long-term conditions is often no longer necessary (e.g. statins, antihypertensives, urate-lowering treatment[s]); many of these medicines are taken orally (which may no longer be possible), and continuation may increase “pill burden” or cause interactions with medicines introduced for symptom control.¹⁷ Possible exceptions include anticonvulsants or other medicines used to control symptoms, e.g. a diuretic for heart failure, that could impact comfort or cause distress if withdrawn.^{7, 20} In some cases, essential long-term medicines may be switched from an oral to subcutaneous route if possible, e.g. levetiracetam, dexamethasone. Most diabetes medicines can be stopped in the last days of life, however, insulin should usually be continued in patients with type 1 diabetes.²¹ Discontinuing insulin may be appropriate for patients with type 2 diabetes if they have previously only required small doses to achieve glycaemic control.²¹

  For further information on managing diabetes in the last days of life, see: diabetes-resources-production.s3.eu-west-1.amazonaws.com/resources-s3/public/2021-11/EoL_TREND_FINAL2_0.pdf#page=21

• Food and fluids. People should be encouraged to continue eating and drinking as long as they feel comfortable doing so (including via parenteral feeding, if appropriate). In most cases, people will become gradually less interested or capable of eating/drinking as they approach death, and increasing food/fluid intake is unlikely to prolong life or decrease their discomfort.²² Trying to compel intake may also cause further distress or result in aspiration, particularly if they have swallowing difficulties.²² However, some people may find pleasure and comfort from tasting food and derive social/cultural benefits from sharing meals with their family/whānau.²²
• Supportive equipment. Identify whether the person requires access to supportive equipment, e.g. syringe drivers, pressure relieving mattresses/cushions, hoist or electric bed, incontinence products or commodes. Contact your local PHO, allied health or hospice service for more information on funding options or equipment loans. An occupational therapist can assess patient-specific needs if required. In some cases, families choose to purchase equipment themselves.
• Oxygen. The use of domiciliary oxygen is not common in the last days of life unless a patient has established hypoxia due to disease, however, a new prescription may occasionally be considered in the dying phase for certain patients (but this may be dependent on local policies and advice). Dyspnoea is primarily managed using pharmacological treatment in the last days of life, supported by non-pharmacological strategies, as appropriate.
• Implantable cardioverter-defibrillators (ICDs). In most cases, an ICD should be deactivated as the person approaches death.²³ If not turned off, the device may cause repeated shocking in response to natural arrhythmic patterns that occur close to death;^{23, 24} this is likely to be distressing for both the person and their family/whānau. Deactivating an ICD will not cause a worsening of cardiac output.
• Cultural, religious and spiritual needs. Identify any specific traditions, customs or practices that are important to the person and consider how these can be incorporated into the care plan. For some, the last days of life are a time when they want to re-explore concepts of faith and cultural links that have not previously been central to their life.
• Share information with relevant agencies regarding the person’s deterioration. Depending on the patient’s clinical history, other health services may already be involved in their care, e.g. oncology, geriatrics, district nursing services, residential care facilities. While it may not be practical or applicable in every situation, these groups should be identified and contacted to inform them of the persons deteriorating condition (particularly if upcoming appointments are scheduled). N.B. Ensure requirements under the Privacy Act 2020 are adhered to.

Ongoing assessment and delivery of the care plan

Once the components of an individualised care plan have been established, the next step is to determine the responsibilities of those involved and frequency of ongoing assessment. While New Zealand guidelines state that health practitioners should undertake regular assessments of the person’s condition,¹ the practical capacity to do this in-person (i.e. via home visits) can be a challenge in primary care. In many cases it may be the family/whānau who are providing care and reviewing needs with the support of a community-based nurse (or other health professionals) who will report back to the lead health practitioner.

If they are willing, family/whānau should be encouraged to regularly assess and document symptoms and other aspects of wellbeing so that the need for additional support can be identified and provided early.¹ This information should be reviewed at least once daily by a member of the healthcare team.¹⁰ If it is determined that a person’s condition is deteriorating or new symptoms have emerged, both they and their family/whānau should be involved in conversations about the options for ongoing care.

Recognising when death approaches

Being able to recognise impending signs of death is important to ensure the final moments of life are as comfortable and dignified as possible (Table 1).¹⁰ Discussing this information may help the family/whānau to prepare for their loved ones passing, particularly if a healthcare professional will not be present. However, these features do not all occur in every instance or in a specific order.

---

Table 1. Impending signs of death.¹⁰

Care after death

Before the person’s death, family/whānau should be provided with practical advice on what to do when it occurs. This discussion ensures the person’s dignity, respect and wishes will be maintained following death, and allows their loved ones to focus on processing emotions and supporting each other (rather than decision-making).

Key information to provide includes:¹⁰

• The features to look for that indicate death has occurred (Table 1). It is helpful to note the time of death.
• There is no need to rush – it is okay to spend time with the person after they die. The family/whānau may also want to contact friends or other relatives to come and say goodbye.
• The lead health practitioner should be contacted so the death can be confirmed and a death certificate written. If the death occurs during the night, the family/whānau can wait until the morning before making contact.
• An ambulance does not need to be called; a funeral director will usually arrange collection of the body/tūpāpaku once contacted by the family/whānau. However, there is no legal requirement to use a funeral director and in some cases family/whānau may choose to co-ordinate the funeral themselves. Ensure the family is aware of all legal obligations, e.g. confirmation of cause of death and registration of the death.
• Keep the room as cool as possible (e.g. turn off heaters and electric blankets); this will help slow the process of decomposition and is particularly important if the person did not want their body/tūpāpaku embalmed following death
• The person’s body/tūpāpaku does not need to be washed. If a decision is made to do this (e.g. for cultural reasons or personal preference), a sponge can be used on the skin/face, medical/nursing equipment removed, dentures and glasses replaced if wished, and the person dressed in favourite clothes. The family/whānau should be advised that the person’s body/tūpāpaku will become increasingly stiff over time, so any movement or repositioning should not be excessively delayed.

Assessing family/whānau bereavement risk

Once death occurs, the care team’s involvement continues as family/whānau may require further support. This might involve an ongoing active role for the general practitioner and/or nurse(s) if the family/whānau are enrolled with the same practice, or if they are not, enquiring whether their needs are being considered by another care provider.

A loved one’s death can be one of the most challenging events that family/whānau experience. While many people process grief and integrate their loss, others have significant difficulty adjusting to their bereavement.²⁸ This challenge can be compounded if there is an abrupt discontinuation of contact with the person’s general practice team or lack of follow-up.²⁹

It is recommended to discuss bereavement support and ensure a risk assessment is conducted for all family/whānau members who wish to have one (see link below).¹ For family/whānau assessed as being at low bereavement risk, it is usually sufficient to provide written resources (e.g. a brochure or website) and to have a general discussion about the spectrum of emotions that can be experienced. Most will adjust in time with the support of their friends and family/whānau.²⁸ However, more active intervention(s) may be required for people with multiple bereavement risk factors (e.g. high levels of anger or guilt, a lack of social support).¹ People can be directed to a local bereavement support agency or specialist support, e.g. from a counsellor or hospice bereavement service. Many funeral director services also offer bereavement support.

Further resources:

• Hospice resources for family carers: www.hospice.org.nz/resources/a-guide-for-carers/
• He Aratohu mā ngā Kaitiaki (A Guide for Carers – includes information on how to access financial support, if required): www.msd.govt.nz/documents/what-we-can-do/community/carers/a-guide-for-carers.pdf
• Further information on financial support:
  • www.healthinfo.org.nz/index.htm?Financial-support.htm
  • www.healthinfo.org.nz/index.htm?Financial-support-for-health-costs.htm#o58197
• Regional palliative care programmes and funding schemes may be available; contact your PHO or local hospice for further information