Advanced Life Limiting Illnesses
Palliative Care Curriculum
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Definitions
Advanced Life Limiting Illnesses:
Advanced life limiting illnesses are conditions that can be reasonably expected to lead to the death of a person within the foreseeable future. The term encompasses cancer and non-cancer illnesses which are expected to shorten a person’s life.
End of Life Care:
End of life care is used in this Plan to mean the care provided to a person during the period of time when they are living with an advanced, progressive life-limiting illness. This period may be identified by clinicians asking themselves the question: “Would you be surprised if the person died in the next 12 months or so?”.
Generalist Clinicians:
Generalist clinicians include general practitioners, community nurses and allied health professionals, staff in multipurpose services and residential aged care facilities. In the context of this plan it includes health care providers whose central work is outside of palliative care.
Model of Care:
Defines the way health services are delivered by outlining best practice care and services for a person or population group or patient cohort as they move through the stages of a condition, injury or event. It aims to ensure people get the right care, at the right time, by the right team and in the right place.
Needs Based Care:
Refers to care based on the unique needs of patients and their families and carers. Frequent reassessment ensures that care and support can be adjusted as people’s needs change.
Palliative Care:
Palliative care is an approach that improves the quality of life of patients and their families facing the problems associated with life-threatening illness, through the prevention and relief of suffering. Palliative Care is not limited to the final weeks of a person’s life.
Palliative care may be provided by specialist palliative care clinicians or generalist clinicians including a person’s general practitioner in their local community. Care provided by generalists is often referred to as ‘a palliative approach’ to care.
Specialist Palliative Care:
Specialist palliative care describes services provided by a multidisciplinary team of specialist palliative care clinicians who have expert knowledge and skills in the care of people living with an advanced life limiting illness, in particular in the management of complex symptoms.
https://web.archive.org/web/20190305191500/http://www.grpcc.com.au/wp-content/uploads/2016/08/when_i_die_2_0.pdf
Typology of potential dying trajectories in acute stroke
Sudden
- Little evidence of healthcare in the last year of life
- Unexpected death - e.g. ineffective resuscitation; complications of thrombolysis; overwhelming cardio/cerebrovascular event
- Plurality of physician input in last year of life
- Expected death; distinct terminal phase although not set within a general context of deterioration
- Evidence of multiple acute interventions; exacerbations of health problems; evidence of organ failure
- Evidence of increasing health problems; multiple acute, curative interventions; indistinct terminal phase
- Frailty associated with long-term health condition
- Multiple health problems; general picture of persisting, and overwhelming illness
- Unable to classify as above
Integration of Palliative Care into Clinical Care
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- 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.
- Palliative care can be provided wherever the patient lives – home, long-term care facility, hospice or hospital.
- Allowing children to talk about death and dying can help them develop healthy attitudes that can benefit them as adults. Like adults, children also need time to say goodbye to people who are important to them.
- Pain is not always a part of dying. If pain is experienced near end of life, there are many ways it can be alleviated.
- Keeping people comfortable often requires increased doses of pain medication. This is a result of tolerance to medication as the body adjusts, not addiction.
- Appropriate doses of morphine keep patients comfortable but do not hasten death.
- Palliative care ensures the best quality of life for those who have been diagnosed with an advanced illness. Hope becomes less about cure and more about living life as fully as possible.
- Sometimes the needs of the patient exceed what can be provided at home despite best efforts. Ensuring that the best care is delivered, regardless of setting, is not a failure.
https://www.virtualhospice.ca/en_US/Main+Site+Navigation/Home/Topics/Topics/What+Is+Palliative+Care_/10+Myths+about+Palliative+Care.aspx
- Good palliative care is not just about supporting someone in the last months, days and hours of life, but about enhancing the quality of life for patients and those close to them at every stage of the disease process from diagnosis onwards.
- A palliative care approach should be considered alongside active disease management from an early stage in the disease process.
- Palliative care focuses on the person, not the disease, and applies a holistic approach to meeting the physical, practical, functional, social, emotional and spiritual needs of patients and carers facing progressive illness and bereavement.
Kualitas hidup pasien adalah keadaan pasien yang dipersepsikan terhadap keadaan pasien sesuai konteks budaya dan sistem nilai yang dianutnya, termasuk tujuan hidup, harapan, dan niatnya.https://www.jpsmjournal.com/article/S0885-3924(02)00468-2/fulltext
- In an effort to address the issues that were causing suffering during the dying process, the modern hospice and palliative care movement started during the 1960s in the United Kingdom, and the 1970s in both the United States (1972) and Canada (1975).
- (The term “palliative care” or “soins palliatifs” in French was initially developed by Balfour Mount, Montréal, Canada, as a phrase that would be synonymous with “hospice care” for use in the Francophone community of Canada where “hospice” was not an acceptable term to describe end-of-life care [due to its longstanding history as a term to describe shelters for the wayward and the disadvantaged]).
Categories of life-limiting and life-threatening conditions:Palliative Care Outcome
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- Category 1 Those children with life-threatening conditions for which curative treatment may be feasible but can fail. e.g., cancer, irreversible organ failure
- Category 2 Those children with conditions in which there may be long phases of intensive treatment aimed at prolonging life, but premature death is still possible e.g., cystic fibrosis, Duchenne muscular dystrophy
- Category 3 Those children with progressive conditions without curative treatment. e.g., batten disease, mucopolysaccharidoses
- Category 4 Those children with conditions with severe neurological disability, which may deteriorate unpredictably, but are not considered progressive.
Many people find that their spiritual beliefs or a belief in something greater than themselves is a comfort at this time.
https://www.hepatitis.va.gov/pdf/HCC-patient-modules.pdf
- • Continuing with important life roles and usual routines.
- • No longer feeling ‘who I once was’.
- • Being able to perform daily activities independently.
- • Adequate symptom relief and a sense of control.
- • Maintaining dignity.
- • Maintaining a sense of humour.
- • Sharing time with friends and family.
- • Not being a burden to others.
Hospice and End of Life Care
- • Model for quality, compassionate care for people facing a life-limiting illness
- • Involves a multi-disciplinary team that provides – medical care, pain and symptoms management, emotional and spiritual support to person and family members
- • Focus –
- • “It’s about how you live.”
- • Develop a plan to die pain-free, with dignity, without suffering, and engage others in family to live well afterwards (your legacy).
- a. Gejala fisik
- b. Kemampuan fungsional (aktivitas)
- c. Kesejahteraan keluarga
- d. Spiritual
- e. Fungsi sosial
- f. Kepuasan terhadap pengobatan (termasuk masalah keuangan)
- g. Orientasi masa depan
- h. Kehidupan seksual, termasuk gambaran terhadap diri sendiri
- i. Fungsi dalam bekerja
Di Perawatan Paliatif mengharuskan kita semua setiap hari lebih baik menyempatkan diri membaca informasi atau edukasi tentang perawatan paliatif. Meskipun cuma membaca seuntai paragraf kalimat tentangnya. Selamat belajar, berdoa dan bekerja.
Finance Problems in Palliative Care
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The Tasmanian Palliative Care Formulary includes:
Medications with specialised palliative care indications
Routes and dosing, including via syringe drivers
Variations on usual prescribing for this patient group
Summaries that compare medications within a class, eg. NSAIDs, benzodiazepines
Links to useful resources;
- symptom management guidelines
- syringe driver compatibilities, and
- opioid conversion tables
http://www.advancecaredirectives.sa.gov.au/
- It is ethically important not to harm patients approaching the end of life by providing burdensome or futile investigations and/or treatments that can be of no benefit.
- SA Health have a range of online resources providing information to professionals on the Advance Care
The consequent ones generated by the family conference
in the context of palliative care
refer to a central principle thereof:
communication.
The literature highlights two main factors
resulting from the family conference:
effective communication
and the consensual establishment of an action plan.
It is inferred that,
given the expressiveness of these consequents,
they are related to the tripod that
integrates the possibility of providing palliative care:
patient, family and team.
And, in addition to symptom control,
the main needs of patients and families are
focused on the area of communication,
being the effective communication
in the quality of care received recognized.
https://pubmed.ncbi.nlm.nih.gov/29324964/
https://derbyshire.eolcare.uk/
Derbyshire Alliance for End of Life Care . Mendaftar dan login. Beberapa modul bagus tentang perawatan Akhir Hayat disediakan secara gratis. Nuwun
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