Standards for providing quality palliative care for all Australians
- 1. Care, decision-making, and care planning are each based on a respect for the uniqueness of the patient, their caregiver/s and family. The patients, their caregiver/s, and families’ needs and wishes are acknowledged and guide decision-making and care planning.
- 2. The holistic needs of the patient, their caregiver/s, and family are acknowledged in the assessment and care planning processes, and strategies are developed to address those needs, in line with their wishes.
- 3. Ongoing and comprehensive assessment and care planning are undertaken to meet the needs and wishes of the patient, their caregiver/s, and family.
- 4. Care is coordinated to minimize the burden on the patient, their caregiver/s, and family.
- 5, The primary caregiver/s is provided with information, support, and guidance about their role according to their needs and wishes.
- 6. The unique needs of dying patients are considered, their comfort is maximized, and their dignity is preserved.
- 7. The service has an appropriate philosophy, values, culture, structure, and environment for the provision of competent and compassionate palliative care.
- 8. Formal mechanisms are in place to ensure that the patient, their caregiver/s, and family have access to bereavement care, information, and support services
- 9. Community capacity to respond to the needs of people who have a life-limiting illness, their caregiver/s, and family is built through effective collaboration and partnerships.
- 10. Access to palliative care is available for all people based on clinical need and is independent of diagnosis, age, cultural background, or geography.
- 11. The service is committed to quality improvement and research in clinical and management practices.
- 12. Staff and volunteers are appropriately qualified for the level of service offered and demonstrate ongoing participation in continuing professional development.
- 13. Staff and volunteers reflect on practice and initiate and maintain effective self-care strategies.
John P. Rosenberg, Margaret O’Connor & Xiaoyan Huang (2018)
A qualitative evaluation of Australian palliative care services’ participation in National Palliative Care Standards self-assessment
Progress in Palliative Care, 26:2, 81-87, DOI: 10.1080/09699260.2018.1454093
Edmonton Symptom Assessment System (ESAS-r)
Paediatric guiding principles
1. Dying is a human experience,
not just a biological or medical event.
2. The death of a child is a traumatic event
for their family and surrounding community.
3. The child and their parents
must be empowered to contribute
to decisions about the child’s care.
4. Providing for the cultural,
spiritual,
psychosocial
and developmental needs
of children and families is
as important as meeting
their physical needs.
5. All children, including
those with chronic or severe mental illness,
intellectual or developmental disability,
have the right to
adequate pain relief
and symptom control,
and to the prevention
and relief of suffering.
6. Care of the dying is urgent care.
Recognising when a child is approaching
the end of their life is
essential to delivering appropriate,
compassionate and
timely end-of-life care.
7. Prognosis and the way that
a child responds to medical treatment will
vary between individuals.
The potential for ambiguity
and uncertainty at the end of life
must be openly
and honestly acknowledged.
8. Safe and
high-quality paediatric end-of-life care is
family-centred.
It should be aligned with the values,
needs and wishes
of the child,
their parents
and their family.
9. Safe and high-quality
paediatric end-of-life care
requires the availability
of appropriately qualified,
skilled
and experienced interdisciplinary teams.
10. Safe and high-quality paediatric
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.
11. The interdisciplinary team
has a responsibility to provide timely,
accurate and appropriate information
about the child’s clinical condition
and care to the child
and their parents
in a form
that is understandable to them.
12. End-of-life decision-making should be
shared between the interdisciplinary team,
the parents and,
where appropriate,
the child.
13. Decisions relating to the care
of a child must be made
in the child’s best interests
in accordance with legislation.
14. Parents hold legal responsibility
for decision-making about their child’s care.
15. Parents have the right
to refuse medical treatments
for their children provided
such decisions do not go against
the child’s best interests.
16. It is ethically important not to harm a child
who is approaching the end of life
by providing burdensome investigations
and treatments
that can be of no benefit.
17. Doctors are not obliged
to initiate
or continue treatments
that are not in the
best interests
of the child.
18. Care of the child,
and care for parents,
siblings
and other family members,
extends from the time
a child receives a life-limiting diagnosis
through to the period after
the child has died.
https://www.safetyandquality.gov.au/standards/nsqhs-standards/comprehensive-care-standard
NEW Updated Proactive Identification Guidance - 6th edition 2016 - To download the Updated GSF Proactive Identification Guidance please complete the Registration Form below.
https://www.goldstandardsframework.org.uk/PIG
- Difficulty sleeping
- Appetite problems
- Nausea
- Bowel problems
- Breathing problems
- Fatigue
- Pain
Signs and Symptoms at the End of Life
http://inctr-palliative-care-handbook.wikidot.com/signs-and-symptoms-at-the-end-of-life
- Palliative care does not hasten death. It provides comfort and the best quality of life from diagnosis of an advanced illness until end of life.
- Palliative care can benefit patients and their families from the time of diagnosis of any illness that may shorten life.
- People with advanced illnesses don't experience hunger or thirst as healthy people do. People who stop eating die of their illness, not starvation.
- Pain is not always a part of dying. If pain is experienced near end of life, there are many ways it can be alleviated.
- Palliative care can be provided wherever the patient lives — home, long-term care facility, hospice or hospital.
Less appropriate referrals
Specialist Palliative Care is largely inappropriate for:
- Patients with chronic stable disease or disability with a life expectancy of several years.
- Patients with chronic pain problems not associated with progressive terminal disease.
- Competent patients who decline referral.
- Patients who are unaware of their underlying disease (unless this is a cultural preference in which case this needs to be sensitively addressed).
- Those patients whose problems are principally psychological and need specialist psychiatric referral, whether or not they have declined such help.
- Integrated- Inpatient palliative care unit- Consultative palliative care- Clinic or physician practice- Home- Nursing facilities
The Lincolnshire
End of Life Care Pathway
For all Diagnoses
https://web.archive.org/web/20210131045136/https://lincolnshire.moderngov.co.uk/documents/s3603/5.0%20Appendix%20A%20-%20End%20of%20Life%20Care%20-%20Lincolnshire%20Brochure.pdf
https://lincolnshire.moderngov.co.uk/
The seven Cs of primary palliative carehttps://onlinelibrary.wiley.com/
- 1. Communication
- 2. Coordination
- 3. Control of symptoms
- 4. Continuity of care
- 5. Continued learning
- 6. Carer support
- 7. Care of the dying pathway
- Assess and diagnose the cause of symptoms, before planning symptom management
- Treat potentially reversible causes, where appropriate
- Always consider non-drug approaches as they can be as important as the use of drugs
- Management plan is influenced by prognosis and patient choice and depends on the therapeutic goal
- Plan regular REVIEW and reassessment for all symptoms
- Set therapeutic goals for drugs prescribed e.g. use opioids as analgesics, not for sedation
- All drugs need a review date; the goal is to use the minimum effective dose
- Adopt a team approach
- Ask for specialist advice in difficult situations*
- distressed behaviour, sometimes including anger and possible aggression
- confusion
- calling out, shouting or screaming
- hallucinations
- trying to get out of bed or wandering
- being sleepy during the day but active at night
- being unable to concentrate or relax
- jerking or twitching
- fidgeting, including repeatedly picking at clothes or bed sheets.
https://www.mariecurie.org.uk/professionals/palliative-care-knowledge-zone/symptom-control/agitation
Terminal restlessness can be caused by the very medications needed to control a patient’s pain.
https://hellocaremail.com.au/need-know-terminal-restlessness-will-help-loved-one/
As death approaches, some people develop confusion or agitation, commonly known as terminal restlessness. This can be distressing to watch.
https://www.palliaged.com.au/tabid/4707/Default.aspx
It’s important to familiarize yourself with the signs and symptoms of terminal restlessness, with these behaviors often manifesting themselves in outbursts, aimlessness, and lack of attention. Researchers believe these behaviors are spurred on by discomfort and physiological changes in the body, more so than genuine hostility or anger to those around them. The main signs to look for include aggressive behavior or, on the other end of the spectrum, by calm, lethargic behavior.
https://pathwayshealth.org/hospice-topics/hospice-patients-can-experience-anxiety-and-restlessness/
The onset of terminal restlessness can be very abrupt. It may last for a prolonged period or resolve quickly.
https://hospiceofsiouxland.com/terminal-restlessness-delirium-and-agitation-at-end-of-life/
We can’t always know the exact cause. A number of changes happen when a person nears death. Body organs fail and waste may build up in the person’s system, causing confusion and behavioral changes.
https://www.kchospice.org/family/caregiver-tips/restlessness/
- Palliative care is the active, holistic care of patients with serious health-related suffering
- Palliative care aims to improve the quality of life of patients with severe illnesses
- Palliative care is provided to patients, their families and caregivers
- Palliative care includes early identification, comprehensive assessment and adequate management of:
- Physical issues including pain and other distressing symptoms
- Psychological distress
- Spiritual distress
- Social needs
- Whenever possible, these palliative care interventions must be evidence based
- Is applicable throughout the course of an illness, relative to the patient’s needs
- Is provided in conjunction with disease modifying therapies whenever needed
- May positively influence the course of illness
- Provides support to help patients live as fully as possible until death by facilitating effective communication and helping patients and families determine goals of care.
- Intends neither to hasten nor postpone death, affirms life, and recognizes dying as a natural process
- Provides support to help the family and caregivers during the patients’ illness and in their own bereavement
- Must be provided in accordance with the cultural values and beliefs of the patient and family
- Is applicable throughout all health care settings (from primary to tertiary) and can be provided by health care professionals with basic palliative care training
- Requires specialist palliative care with a multiprofessional team for complex cases
- In order to achieve palliative care integration, governments must:
- Adopt adequate policies and norms that include palliative care in health laws and national health programs
- Ensure access to essential medicines for pain relief and palliative care, including pediatric formulations
- Integrate palliative care services in a continuum of care with emphasis on community-based care
- Ensure access to adequate palliative care for vulnerable groups, including children and older persons
- Include palliative care as an integral component of the ongoing education and training offered to care providers, including basic, intermediate, and specialist training, as well as continuing education for health care workers and caregivers
PALLIATIVE CARE
IN PAEDIATRICS
https://web.archive.org/web/20210306235148/https://www.caresearch.com.au/QuoCCA/Portals/6/Documents/A-Practical-guide-to-Palliative-Care-in-Paediatrics.pdf
Palliative care should start when a person is diagnosed with a serious illness. It continues through treatment, to the end of life, and helps support the family through their grief.
https://www.cancercareontario.ca/en/cancer-treatments/palliative-care
