Published: 27 November 2023
It is strongly recommended that the following article is read before considering the questions:
The associated articles on symptom management may also help when considering these discussion points:
Death is an inevitable part of every person’s journey. The
idea of what defines a “good death” differs between people
and is shaped by their life experiences, beliefs, culture and
medical history. How someone transitions through their
final days can also vary significantly. Delivering a consistent
standard of care that is both individualised yet adaptable is
Hospices and other in-patient palliative care providers in
New Zealand work hard to deliver high quality end of life
support, however, a significant number of people will spend
their final days at home. In these situations, general practice
teams may be tasked with being the primary provider of end
of life services, often working in collaboration with other
health professionals, e.g. district nurses, aged residential
care facility staff, hospice services and ambulance services.
As New Zealand’s population ages, the need for this care will
In 2017, “Te Ara Whakapiri: Principles and guidance for the
last days of life” was published by the Ministry of Health
(Manatū Hauora). It outlines the essential components and
considerations required for providing best practice care at
the end of life; specific aspects of this work were updated
in 2020. Key concepts for providing quality and consistent
- Individualising care to meet the needs of the person and their family/whānau
- Clearly and respectfully communicating all information about the person’s status
- Documenting details of conversations and decisions
- Supporting the family/whānau throughout the journey
The principles of Te Whare Tapa Whā can used as a framework
for establishing and delivering an individualised care plan,
taking into consideration not only symptom management
and physical care (taha tinana), but the mental/emotional
(taha hinengaro), family/social (taha whānau) and spiritual
(taha wairua) aspects of wellbeing. After identifying the
lead health practitioner and establishing contact protocols,
a comprehensive baseline assessment is required to
establish physical care needs. This process invariably leads to
anticipatory medicine prescribing so that carers can provide
timely symptom relief without the need for in-person
clinician assessment. Symptoms that commonly occur during
the last days of life include pain, nausea/vomiting, delirium
and psychological symptoms, dyspnoea (breathlessness) and
excessive respiratory tract secretions. Non-pharmacological
management strategies should also be discussed with the
family as an important component of all care plans (e.g.
comfortable environment/atmosphere, using relaxation
techniques, playing music); this can potentially limit the
amount of medicines required and therefore reduce the
associated adverse effects. It is important to also identify any
cultural, religious or spiritual needs that the patient or family/
whānau have and consider how these can be incorporated
into the care plan. Other considerations, depending on the
clinical circumstances, may include discontinuing medicines
used for long-term conditions, providing supportive
equipment, co-ordinating the set-up of a syringe driver and
arranging for implantable cardioverter-defibrillators to be
Once a care plan is established, the family/whānau should be
supported in its implementation; they 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. This information
should be reviewed at least once daily by a member of the
healthcare team. Be conscious that circumstances and the
person’s wishes can change over time, meaning adjustment
of the care plan may be required.
Family/whānau should be equipped with practical advice
on what to do when death occurs. Not only does this
ensure the person’s dignity and wishes will be maintained,
but it also helps to reduce the stress experienced by loved
ones, allowing them to focus on processing emotions
and supporting each other rather than decision-making.
Bereavement risk and support should also be considered;
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.
General questions for discussion
- Are you or your general practice regularly involved
in caring for patients in their last days of life? If not,
what are the main reasons? For example, are you not
adequately resourced to do so, or do sufficient local
resources already exist? Do you expect that demand
for this type of care will increase in the future in your
- End of life care should ideally be delivered as part of a
multidisciplinary clinical service. Do you have a working
relationship with your local hospice or other community
palliative care providers? e.g. district nursing service,
residential care, ambulance services/extended care
- If so, what works well and what could be improved?
- If not, what are some of the barriers to doing so?
- An individualised approach is essential when planning
the delivery of end of life care; this should ideally
consider all aspects of Te Whare Tapa Whā (i.e. the four
dimensions of wellbeing). How do you/would you go
about prompting and structuring these discussions with
- There may be occasions when the patient is unable
to provide input, and there is a lack of agreement or
conflict between family/whānau members regarding
specific components of a care plan. How could these
difficulties be resolved?
- Anticipatory medicine prescribing is invariably required
for home-based care in the last days of life so that carers
and family/whānau can provide timely relief:
- Syringe drivers have a significant role in symptom
management for people in their last days of life.
Are you familiar with the set up and maintenance
of models currently available in New Zealand, or
would you rely on the expertise of other community
palliative care providers? e.g. district nurses.
- What is your approach to ongoing assessment of
need and replenishment of home medicine supplies?
- Do you find that family members usually understand
and are able to follow care instructions, and do they
generally feel comfortable about being responsible
for administering medicines? How do you address
health literacy-related challenges if they are a factor?
- Some patients or their family/whānau may want
to incorporate complementary or alternative
medicine(s) to manage symptoms in the last days
of life. How do you go about discussing potential
benefits and risks? Do you have any examples of
complementary treatments that you think are
effective for managing symptoms in the last days of
- Non-pharmacological approaches to care are also
essential in the last days of life. What general suggestions
would you give to family/whānau about creating a
comfortable environment for their loved one? Are
there any specific examples of a non-pharmacological
intervention you find helpful for addressing particular
- What are some of the key drivers of unplanned hospital
admissions for people wanting to die at home? Do you
find that identifying and managing these factors helps to
reduce the likelihood of unplanned hospital admission?
Do you feel confident in recognising when a patient’s
needs exceed the capacity/resources available in primary
- How do you help prepare family/whānau for their
loved ones passing? What is your approach regarding
bereavement needs/risk assessment? Were you aware
that standardised tools exist to aid this evaluation, such
as the “Te Ara Whakapiri Bereavement Risk Assessment
Specific questions regarding symptom management
- What symptoms do you find are the most complex to manage in the last days of life and why?
- Morphine is considered the first-line pharmacological
treatment for pain in the last days of life, ideally
administered subcutaneously. What is your general
approach to analgesia in the last days of life? Given that
many patients in this context will already be established
on an analgesic regimen, can you think of an example
where modifying an existing regimen was particularly
- Not all patients can tolerate morphine, meaning
fentanyl may be required in some cases. How likely
are you to prescribe fentanyl in this setting? Do you
feel confident in deciding on an appropriate dosing
regimen (given that it is typically more complicated
than morphine), or would you usually seek advice
from a palliative care physician if fentanyl is needed?
- Opioid use is a common cause of nausea and vomiting in the last days of life, yet these medicines are an integral
component in the management of other symptoms.
What strategies do you have for reducing the nauseating
effects of opioids?
- Can you think of any cases where there have been
other specific modifiable causes for these symptoms?
- The psychological state of patients in their last days of
life can vary significantly. In practice, what do you find
are the most common symptoms or signs of delirium?
How confident are you in diagnosing delirium in a
dying patient, and distinguishing symptoms from other
emotional states? e.g. fear, anxiety or positive spiritual
- Non-pharmacological strategies are considered
first-line for patients with delirium that is not
causing distress. What is your threshold for initiating
pharmacological treatment, and what medicines do
you find work best?
- How do you go about assessing for dyspnoea in patients
with limited or no communication in their last days of
- How do you address the potential for respiratory
depression in patients requiring opioids for dyspnoea?
- Noisy breathing caused by excessive respiratory
secretions – sometimes called the “death rattle” – is
common during the last days of life and a normal part of
the dying process. How would you explain this to family/whānau to reassure them that their loved one is not
suffering? Were you aware that this symptom is generally
What key learning points did you take away from reading these resources? Did you discover something new? Are there any specific aspects in your current approach to delivering end of life care that you plan on changing?