Victoria’s end of life and palliative care framework defines end of life as the 12 months before death; however, end of life may be shorter or longer.
Guiding principles
1. Dying is a normal part of life
and a human experience,
not just a biological
or medical event.
2. Patients must be empowered
to direct their own care,
whenever possible.
A patient’s needs,
goals and wishes
at the end of life
may change over time.
3. Providing for the cultural,
spiritual and psychosocial needs
of patients, and their families and carers is
as important as meeting their physical needs.
4. Recognising when a patient is
approaching the end of their life is
essential to delivering appropriate,
compassionate and timely end-of-life care.
5. The prognosis and the way
that people respond to medical treatment will
vary between individuals.
This means that there is potential
for ambiguity and uncertainty at the end of life.
This must be honestly
and openly acknowledged,
and discussed with patients,
substitute decision-makers,
families and carers.
6. Safe and high-quality end-of-life care is
patient and family-centred.
Whenever possible,
it should be aligned with the values,
needs and wishes of the individual,
and their family or carers.
Such care should consider
the patient’s expressed wishes
regarding the circumstances,
environment and place
in which they wish to die.
7. Safe and high-quality end-of-life care requires
the availability of appropriately qualified,
skilled and experienced
interdisciplinary teams.
8. Safe and high-quality end-of-life care
requires effective communication, collaboration
and teamwork to ensure continuity
and coordination between teams,
within and between settings,
and across multiple episodes of care.
9. Care of the dying is urgent care.
Timely recognition of a patient’s transition
to the terminal phase of life
must be documented
and communicated
to patients, families, carers
and other health professionals
by the interdisciplinary team.
The care plan must be specifically
revised to meet the unique needs
of the patient, family
and carers during this phase.
10. End-of-life decision-making should be shared
between the interdisciplinary team and the patient.
Substitute decision-makers,
families and carers should be involved,
in accordance with the patient’s expressed wishes
and/or jurisdictional legislation.
11. The interdisciplinary team has
a responsibility to:
• provide timely and accurate information
regarding the patient’s clinical condition
and its severity or stage,
the expected disease trajectory,
the available treatments,
and the likelihood of response
to such treatments
• clearly communicate information
to support patients
(or substitute decision-makers, families and carers)
to make decisions about care,
and to check that they understand the implications,
consequences and risks
associated with such decisions
• invite patients to participate
in the process
of advance care planning,
and create opportunities
for patients to make decisions
and to communicate their
values, goals and wishes regarding
their end-of-life care
• offer support, expert opinion
and advice so that patients
(or substitute decisionmakers, families and carers)
can participate in fully informed,
shared (or supported) decision-making
• identify existing advance care plans
and provide care in accordance
with the patient’s expressed wishes
• document, communicate
and hand over the agreed plan of care
and any limitations of medical treatment
to other clinicians involved
in the patient’s care.
12. For ethical reasons,
it is important not to harm patients
approaching the end of life
by providing burdensome investigations
and treatments that can be of no benefit.
13. Patients have the right
to refuse medical treatments.
Decisions regarding treatment
may be made in advance
and remain valid unless the patient
(or substitute decision-maker, family and carers)
state otherwise.
14. Unless required by law,
doctors are not obliged
to initiate or continue treatments
that will not offer a reasonable hope
of benefit or improve
the patient’s quality of life.
15. Care of the deceased person,
and care for families
and carers extends
to the period after the patient has died.
THE BENEFITS OF PALLIATIVE CARE ARE ROBUST
Palliative care
improves quality of life,
decreases treatment utilization
near the end-of-life,
and decreases healthcare spending.
Patients and families are
unequivocally pleased with palliative care services,
despite hesitation surrounding their involvement.
There is increasing evidence
that early palliative care involvement
in patients with terminal diseases,
such as advanced cancer,
may improve many aspects of care
including quality of life,
treatment received,
and cost.
Furthermore,
the recent findings that
the involvement of palliative care
in patients with advanced cancer
led to improved survival
has been impactful.
Contrary to traditional ideology,
palliative care is
actually appropriate
at any stage of the disease,
and can be provided
concurrently with curative treatment.
Cary Jo R. Schlick MD
David J. Bentrem MD, MS
J Surg Oncol. 2019;120:30-34.
PMID: 31102469 DOI: 10.1002/jso.25499
- Palliative care is care that is tailored to help with the effects of life-limiting illnesses. While patients with life-limiting illness usually have greater need of palliative care in their last 12 months of life, palliative care is not limited to a person's last 12 months.
- Provision of palliative care is based on people’s needs, rather than diagnosis or prognosis, and can be provided at the same time as treatment to slow down or resolve life-threatening conditions.
Core characteristics of palliative include the following:
- • Care is provided and services are coordinated by an interdisciplinary team
- • Patients, families, palliative, and non-palliative healthcare providers collaborate and communicate about care needs
- • Palliative care is NOT the same as hospice care
- – Hospice is a specialized setting for delivering palliative care to individuals nearing death
- • Palliative care is not limited to the end-of-life phase alone and can be provided to patients and their families at any point in the illness trajectory
- • Palliative care may be provided independently or in conjunction with medical treatments targeting the disease
Differences Between Palliative Care and End-of-Life Care
https://bit.ly/Diff_PCEOLC
Palliative and end-of-life care
Think carefully about the findings above and answer the following questions:
- 1. Is death regarded as normal?
- 2. Is support only for the dying person?
- 3. Is palliative care used instead of other forms of treatment?
- 4. Does palliative care include bereavement counselling?
- 5. Is pain relief the only aim of palliative care?
Comment
In palliative care, death is regarded as a normal part of life – after all everybody dies.
Yet the support offered in a good palliative care approach supports the dying person and others who need support at this difficult time, with bereavement counselling being an example after the death of the person. It allows for different treatments to continue if they are in the best interest of the dying person, which include pain relief if necessary.
If these were the answers you thought of, you are developing an understanding of palliative care.
“ Relieve suffering and improve the quality of living and dying. Such care approach strives to help patients and families:
- 1) Address physical, psychological, social, spiritual and practical issues, and their associated expectations, needs, hopes and fears;
- 2) Prepare for and manage self-determined life closure and the dying process; and
- 3) Cope with loss and grief during the illness and bereavement” (Ferris et al., 2002, p. 17)
The World Health Organization’s (WHO) definition of palliative care closely aligns with the CHPCA’s definition of hospice palliative care. WHO (2002) defines palliative care as an approach to care that aims to:
“ Improve the quality of life of patients and their families facing the problems associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual.” (p.14).
The palliative care team plays an important part in enhancing a patient's quality of life by:
- Recognising symptoms such as pain, nausea, fatigue, breathing or swallowing difficulties, constipation, and hopelessness.
- Identifying the patient's goals and needs so a palliative care plan can be developed specially for the patient.
- Understanding that many patients and their families struggle to make decisions. We help to facilitate difficult conversations between all parties so that trust can be established and relationships strengthened.
- Assisting with advanced care directives to help people formulate and communicate their preferences regarding care during future incapacity. It must be understood, however, that euthanasia cannot be accepted as part of palliative care.
Definition of End of Life Care
- Advanced, progressive, incurable conditions
- General frailty and co-existing conditions that mean they are expected to die within 12 months
- Existing conditions if they are at risk of dying from a sudden acute crisis in their condition
- Life-threatening acute conditions caused by sudden catastrophic events.
General Medical Council 2009
http://www.gmc-uk.org/static/documents/content/Treatment_and_care_towards_the_end_of_life_-_English_1015.pdf
Once identified and included on the register, such patients may be able to receive additional proactive support, leading to better co-ordinated care reflecting their preferences. This is in line with current thinking on shared decision-making processes and the importance of integrating advance care planning discussions into delivery of care. It is based on consideration of people’s needs rather than exact timescales, acknowledging that people need different things at different times. Earlier recognition of possible illness trajectories means their needs can be better anticipated and addressed.
What Is a Trajectory of Dying?
- “Trajectories of dying” were first articulated by researchers at the Institute of Medicine in the late 1990s as a conceptual framework for understanding the experience of illness and dying in America today. The trajectories map the course of decline in terms of “shape” and “duration” – the particular path the illness takes toward death and the speed with which it progresses (Field & Cassell, 1997).
- Trajectories are also often predictive, though not determinative, of where a patient will die, and they have significant influence over the opportunity for and timing of advance care planning and palliative or hospice care. Different trajectories of illness require different preparations, coping strategies, and responses. An understanding of the trajectories offers insights into the lived experience of people who are ill and those providing care for a loved one, and helps clinicians and their patients anticipate and plan for the challenges posed by the trajectory.
https://icd.who.int/browse10/2019/en#/Z51.5
ICD-11 (Foundation)
The classification used nationally to assign diagnosis codes is the ICD-10-AM (see Classifications), with the ICD-10-AM 9th edition being used for the 2016–17 reference year. One of the codes in that classification—Z51.5—is Palliative care. While diagnosis codes usually describe a condition such as a disease, injury or poisoning, they can also be used in certain instances to indicate the specific care or service provided for a current condition or other reasons for hospitalisation (AIHW 2018). This is the case when Palliative care is recorded using a diagnosis code.
In 2016–17, there were about 77,400 hospitalisations identified as providing some form of palliative care, regardless of the care type assigned. These hospitalisations are identified by either the assignment of the ICD-10-AM diagnosis code of palliative care (Z51.5), or by the assignment of the palliative care type (or both).
Caring for Dying Patients in Palliative Care
https://bit.ly/CaringforDying
Curative care refers to treatment and therapies that have the intention of improving the patient's symptoms and/or curing the patient's medical problem.
- antibiotics
- surgery
- a cast for a broken limb
- targeted therapy and
- curative chemotherapy.
https://icd.who.int/browse11/
Synonyms: palliation
https://icd.who.int/dev11/
Death is one of the attributes you were created with; death is part of you. Your life's continual task is to build your death.
(Montaigne)
https://bit.ly/2WwTAwX
Guidelines for Informational Pages About Palliative Care.
Key concepts to include in information page:
What is the scope of palliative care?
☛ Palliative care assists with healthcare coordination including discharge planning, care team coordination, care plan formulation, and advanced directives.
☛ Palliative care provides educational services to ensure patients and their families understand key terms, illness trajectory and treatment options
Who receives palliative care?
☛ When listing specific illnesses and diseases that palliative care works with, acknowledge that the list is partial and not exhaustive
Hospice vs. palliative care
☛ Differences between palliative care and hospice include:
# palliative care can be initiated while patients are actively treating or working to cure a serious illness.
# palliative care does not require patients to give up their primary doctors.
### palliative care can be initiated at any time throughout the course of serious illness, whereas hospice is only permitted in the final 6 months of life
Timing of palliative care
☛ Indicating that palliative care can be most beneficial when initiated early in the disease progression.
☛ Indicating that palliative care can be initiated at diagnosis of a serious illness
☛ According to recent research, patients who receive palliative care have fewer costs than patients who do not
Source:
Kozlov, Elissa & Carpenter, Brian. (2015).
"What is Palliative Care?":
Variability in Content of Palliative Care Informational Web Pages.
The American journal of hospice & palliative care. 34.
10.1177/1049909115615566.
https://journals.sagepub.com/doi/10.1177/1049909115615566
Palliative Care: What Is It And Who Is It For?
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IKA SYAMSUL HUDA MZ
