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(Hidup tuh ra sah ngaya) = Santai santai saja!
Bismillah
May God protect and sustain us in our joint mission!
Sunday, December 22, 2019
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Kalau blog CATATAN ini favourite bagimu, ... Semoga Allah swt menuntunmu pada jalan menuju ke Surga-Nya, (yang luasnya seluas LANGIT dan BUMI-Nya).
Dame Cicely Saunders founded St Christopher’s Hospice, in South London, in 1967, and it quickly became a source of inspiration to others. As the first “modern” hospice, it sought to combine three key principles: excellent clinical care, education, and research.
The work of Elizabeth Kübler-Ross in challenging the medical profession to change its view of dying patients brought about great change and advanced many important concepts such as living wills, home health care, and helping patients to die with dignity and respect. The “five psychological stages of dying” (denial, anger, bargaining, depression and finally acceptance) outlined in her book became accepted as common knowledge throughout the world.
Just as it is difficult to think of the modern hospice movement without reference to Dame Cicely Saunders, so it is impossible to think of the Canadian hospice movement without mention of Dr. Balfour Mount. Dr. Mount, a physician who has survived two personal bouts with cancer, took his end-of-life care training with Dame Saunders in England before becoming the founding director of the Royal Victoria Hospital Palliative Care service in 1974. In fact, he created the use of the term “palliative care” in searching for an appropriate bilingual term after discovering that the word “hospice” in French was used to describe nursing homes in France.
As hospice and palliative care continues to evolve, the hope remains that the benefits of a model of care previously available to just a few people at the end of life will, in time, be extended to all who need it - regardless of diagnosis, stage of disease, social situation or means.
http://www.missionhospice.bc.ca/wp-content/uploads/2018/01/A-History-of-Hospice-Palliative-Care.pdf
A New Consensus-Based Definition:
Palliative care:
What is palliative care?
Palliative care is the care of patients with active, progressive, far-advanced disease, for whom the focus of care is the relief and prevention of suffering and the quality of life.
The following should be noted:
Palliative care improves the quality of life for patients with a life-threatening illness and for their families. It aims to relieve suffering by identifying, assessing, and treating pain and other physical, psychosocial, and spiritual problems. Palliative care can be provided whether an illness is potentially curable, chronic, or life-threatening; is appropriate for patients with noncancer diagnoses; and can be administered in conjunction with curative-aimed therapies at any stage of the illness. Hospice is a type of palliative care provided when curative treatment is no longer beneficial or desired, and when life expectancy is measured in months or less. It supports patients and their families while focusing on symptom relief and comfort.
https://www.aafp.org/afp/2013/1215/p807.html
Palliative care should never be withheld until such time that all "active" treatment regimens for the underlying disease have been exhausted.
The message of palliative care is that whatever the disease, however advanced it is, whatever treatments have already been given, there is always something which can be done to improve the quality of the life remaining to the patient.
https://hospicecare.com/what-we-do/publications/getting-started/5-what-is-palliative-care
There are seven key components of this definition.
What’s the difference between palliative care and hospice?
Simply put, all hospice care is palliative, but not all palliative care is hospice. As you can see in the figure below, a person may receive curative treatments, such as chemotherapy, while also receiving palliative care. Hospice care is an optional care benefit that a person may choose to use when nearing the end of their life; it does not include curative treatments.
https://www.oregon.gov/DHS/PROVIDERS-PARTNERS/LICENSING/CBC/Documents/Palliative-Care-Toolkit.pdf
CONTINUUM OF CARE
https://web.archive.org/web/20200914145459/https://www.oregon.gov/DHS/PROVIDERS-PARTNERS/LICENSING/CBC/Documents/Palliative-Care-Toolkit.pdf
Model of integration of palliative care (modified from American Association Institute For Medical Ethics [1999]. EPEC: education for Physicians on end-of-life-core. Chicago,IL. The Robert Wood Johnson Foundation).
https://www.researchgate.net/figure/Model-of-integration-of-palliative-care-modified-from-American-Association-Institute-For_fig1_322211685
https://web.archive.org/web/20110101210615/https://hab.hrsa.gov/tools/primarycareguide/images/PCGfig15_1b.gif
https://www.aiha.com/wp-content/uploads/2015/07/11-Supportive-Palliative-Care-for-People-Living-with-HIV-AIDS.pdf
Understanding Palliative Care and Hospice
https://www.mayoclinicproceedings.org/article/S0025-6196(16)30763-7/fulltext
Bow Tie Model
W.H.O. bases palliative care on four title
Sumber gambar: https://www.closingthegap.ca/wp-content/uploads/2019/04/Palliative-Care-03-03.jpg
Dame Cicely Saunders
IKA SYAMSUL HUDA MZ, MD, MPH
https://twitter.com/drikasyamsul
- 1. Dhawuha: "Kawula nyuwun ngayom ing Pangeraning bangun enjing".
- 2. Saking awonipun samu kawis kang kathitahaken.
- 3. Saha saking awonipun dalu ingkang peteng dhedhet lelimengan nalikanipun datheng.
- 4. Lan saking pihalanipun tiyang ingkang ngempakaken sihir handamoni bundhelan.
- 5. Lan saking pihalanipun tiyang drengki nalika andrengkeni.
Kalau blog CATATAN ini favourite bagimu, ... Semoga Allah swt menuntunmu pada jalan menuju ke Surga-Nya, (yang luasnya seluas LANGIT dan BUMI-Nya).
~aku bukan yang sempurna~
PALLIATIVE, END OF LIFE AND BEREAVEMENT CARE
Perawatan paliatif adalah perawatan yang berpusat pada pasien dan keluarga yang mengoptimalkan kualitas hidup dengan mengantisipasi, mencegah, dan mengobati penderitaan ketika terapi "kuratif" sia-sia.
As hospice and palliative care continues to evolve, the hope remains that the benefits of a model of care previously available to just a few people at the end of life will, in time, be extended to all who need it - regardless of diagnosis, stage of disease, social situation or means.
http://www.missionhospice.bc.ca/wp-content/uploads/2018/01/A-History-of-Hospice-Palliative-Care.pdf
WORLD HEALTH ORGANIZATION DEFINITION
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 by means of early identification and
impeccable assessment and treatment of pain and other problems, physical,
psychosocial and spiritual.
https://palliativecareindonesia.blogspot.com/p/blog-page_18.html
https://palliativecareindonesia.blogspot.com/p/blog-page_18.html
PALLIATIVE CARE
Palliative care is a crucial part
of integrated, people-centred health services (IPCHS).
Nothing is more people-centred
than relieving their suffering,
be it physical, psychological, social, or spiritual.
Thus,
whether the cause of suffering is
cancer
or major organ failure,
drug-resistant tuberculosis
or severe burns,
end-stage chronic illness
or acute trauma,
extreme birth prematurity
or extreme frailty of old age,
palliative care may be needed
and integrated at all levels of care.
The 2030 Agenda slogan
‘Leave no-one behind’
means that governments trying
to achieve Sustainable Development Goal 3 must
develop palliative care policies
to cover the 40 million persons
(a total that includes at least 20 million carers)
who require palliative care
support globally.
Currently,
fewer than 10% of patient
who need palliative care
in low and middle-income countries receive it.
https://www.who.int/health-topics/palliative-care
A New Consensus-Based Definition:
Palliative Care is the active holistic care of individuals across all ages with SHS (serious health-related suffering) because of severe illness and especially of those near the end of life.
It aims to improve the quality of life of patients, their families, and their caregivers.
Suffering is health related when it is associated with illness or injury of any kind.
Health-related suffering is serious when it cannot be relieved without medical intervention and when it compromises physical, social, spiritual, and/or emotional functioning.
Severe illness is a condition that carries a high risk of mortality, negatively impacts quality of life and daily function, and/or is burdensome in symptoms, treatments, or caregiver stress.
https://www.jpsmjournal.com/article/S0885-3924(20)30247-5/fulltext
The holistic approach looks at problems in four groups:
■ Physical – symptoms (complaints), eg pain, cough, tiredness, fever
■ Psychological – worries, fears, sadness, anger
■ Social – needs of the family, issues of food, work, housing and relationships
■ Spiritual – questions of the meaning of life and death, the need to be at peace.
https://thewhpca.org/resources/palliative-care-toolkit
- Provides relief from pain and other distressing symptoms
- Affirms life and regards dying as a normal process
- Intends neither to hasten nor postpone death
- Integrates the psychological and spiritual aspects of patient care
- Offers a support system to help patients live as actively as possible until death
- Offers a support system to help the family cope during the patient’s illness and in their own bereavement
- Uses a team approach to address the needs of patients and their families, including bereavement counselling, if indicated
- Will enhance quality of life, and may also positively influence the course of illness
- Is applicable early in the course of illness, in conjunction with other therapies that are intended to prolong life, such as chemotherapy or radiation therapy, and includes those investigations needed to better understand and manage distressing clinical complications
What is palliative care?
Palliative care is the care of patients with active, progressive, far-advanced disease, for whom the focus of care is the relief and prevention of suffering and the quality of life.
The following should be noted:
- active disease: this activity can be confirmed and measured objectively by clinical examination and investigations;
- progressive disease: this too can be assessed clinically;
- far-advanced disease: more difficult to define but examples are extensive metastatic disease in cancer, refractory cardiac, renal or respiratory failure and total dependency in neurodegenerative conditions or Alzheimer's Disease;
- focus on the quality of life is the key feature of the definition
- it is person-oriented, not disease-oriented;
- it is not primarily concerned with life prolongation (nor with life shortening);
- it is not primarily concerned with producing long term disease remission;
- it is holistic in approach and aims to address all the patient's problems, both physical and psychosocial;
- it uses a multidisciplinary or inter professional approach involving doctors, nurses and allied health personnel to cover all aspects of care;
- it is dedicated to the quality of whatever life remains for the patient
- palliative care is appropriate for all patients with active, progressive, far-advanced disease and not just patients with cancer;
- palliative care is appropriate for patients receiving continuing "active" therapy for their underlying disease.
Palliative care improves the quality of life for patients with a life-threatening illness and for their families. It aims to relieve suffering by identifying, assessing, and treating pain and other physical, psychosocial, and spiritual problems. Palliative care can be provided whether an illness is potentially curable, chronic, or life-threatening; is appropriate for patients with noncancer diagnoses; and can be administered in conjunction with curative-aimed therapies at any stage of the illness. Hospice is a type of palliative care provided when curative treatment is no longer beneficial or desired, and when life expectancy is measured in months or less. It supports patients and their families while focusing on symptom relief and comfort.
https://www.aafp.org/afp/2013/1215/p807.html
What palliative care is not
Though the principles of palliative care are applicable in each of the following they are NOT palliative care services
Most emphatically palliative care is not euthanasia or physician-assisted suicide, both of which focus on death rather than on the quality of life.
- Care of the Elderly (Geriatrics)
- General practice (Family Medicine)
- Care of the Chronically Ill
- Care of Cancer (Oncology)
- Care of the Incurable
- Pain Relief Service
https://hospicecare.com/what-we-do/publications/getting-started/4-introduction
Palliative care should never be withheld until such time that all "active" treatment regimens for the underlying disease have been exhausted.
The message of palliative care is that whatever the disease, however advanced it is, whatever treatments have already been given, there is always something which can be done to improve the quality of the life remaining to the patient.
https://hospicecare.com/what-we-do/publications/getting-started/5-what-is-palliative-care
There are seven key components of this definition.
- 1. Palliative care is an approach to delivering high quality care.
- 2. Care is holistic, encompassing physical, psychosocial and spiritual domains of need thereby requiring interdisciplinary working.
- 3. The family, not the individual, are recognised as the unit of care.
- 4. The aim of care is to prevent and relieve suffering, and improve quality of life. These are the core values of good care. It follows then that this approach should be delivered across all levels and settings of care by all health and social care professionals as normal practice; palliative care is not the exclusive remit of specialists.
- 5. This approach to care is for anyone living with and dying from life-threatening illness. The term life threatening refers to a spectrum of illness from potentially curable to incurable. A life-threatening illness may progress to become life-limiting, with no reasonable prospect of cure; through thoughtful medical intervention and care it may be possible to extend life and improve quality of life. In babies, children and young people the term life-shortening is preferentially used to describe life-limiting conditions.
- 6. Care is not time-limited or based on prognosis, but based on need. Palliative care should be integrated with active treatment and extend throughout the life course to death and, for families, beyond (where bereavement care is indicated). ]
- 7. The full definition recognises death is an inevitable, and normal, part of life. A number of other definitions exist.
Measurement and Evaluation Tools for Palliative Care
https://bit.ly/MeasurementPC
What’s the difference between palliative care and hospice?
Simply put, all hospice care is palliative, but not all palliative care is hospice. As you can see in the figure below, a person may receive curative treatments, such as chemotherapy, while also receiving palliative care. Hospice care is an optional care benefit that a person may choose to use when nearing the end of their life; it does not include curative treatments.
https://www.oregon.gov/DHS/PROVIDERS-PARTNERS/LICENSING/CBC/Documents/Palliative-Care-Toolkit.pdf
CONTINUUM OF CARE
https://web.archive.org/web/20200914145459/https://www.oregon.gov/DHS/PROVIDERS-PARTNERS/LICENSING/CBC/Documents/Palliative-Care-Toolkit.pdf
Model of integration of palliative care
https://www.researchgate.net/figure/Model-of-integration-of-palliative-care-modified-from-American-Association-Institute-For_fig1_322211685
Understanding Palliative Care and Hospice
https://www.mayoclinicproceedings.org/article/S0025-6196(16)30763-7/fulltext
- The concept of beginning palliative care early in the patient’s journey is illustrated by the “Bow Tie” Model above.
- The blue triangle represents disease management, including chemotherapy, radiation, surgery and related psychosocial care.
- The purple triangle represents palliative care, including pain and symptom management and related psychosocial care.
- The patient’s illness takes them to the possible outcomes of rehabilitation and survival or end-of-life care and death, moving through a complementary continuum of disease management and palliative care, with an increasing emphasis on palliative care toward the end of life.
- 1.Symptom management
- 2.Team work
- 3.Relations and communication
- 4.Support for patient relatives during the diseases and after death
- Parkinson’s disease is a progressive neurodegenerative condition, resulting from the death of the dopamine producing neurons in the substantia nigra of the mid brain, and is currently incurable. Thus all treatment is symptomatic, with an average life expectancy post diagnosis of 15 years, although this can vary greatly.
- Because the risk of developing Parkinson’s disease increases with age, the fact that more people are now living into old age means that the overall number of people with Parkinson’s disease is also rising.
Prof.dr. Sunaryadi Tejawinata (Bapak Paliatif Indonesia)
The Institute of Medicine recommends
that “Palliative care should become,
if not a medical specialty,
at least a defined area of
☛ expertise,
☛ education,
☛ and research”.
“Palliative care”
overlaps with
☛ “terminal care”,
☛ “death-and-dying”,
☛ “hospice”,
☛ “end-of-life care”,
☛ “thanatology”,
☛ “comfort care”,
☛ and “supportive care”.
J. ANDREW BILLINGS, M.D.
JOURNAL OF PALLIATIVE MEDICINE
Volume 1, Number 1,1998
https://doi.org/10.1089/jpm.1998.1.73
THE GOALS OF PALLIATIVE CARE
- • To accompany and comfort adult and paediatric patients throughout the course of serious chronic, complex, or life-limiting conditions by continually assessing, preventing, and relieving pain and suffering of any kind – physical, psychological, social, or spiritual – using best available evidence;
- • To thereby provide person-centred and family care that optimizes quality of life and maximizes the dignity of patients and their families;
- • To integrate with and complement prevention, early diagnosis, and treatment of serious chronic, complex, or life-limiting health problems at all levels of any health system and thereby to improve continuity of care, strengthen health systems, and promote universal health coverage.
DECLARATION OF ASTANA
Promotive, preventive, curative, rehabilitative services and palliative care must be accessible to all.
We must save millions of people from poverty, particularly extreme poverty, caused by disproportionate out-of-pocket spending on health.
We can no longer underemphasize the crucial importance of health promotion and disease prevention, nor tolerate fragmented, unsafe or poor-quality care.
We must address the shortage and uneven distribution of health workers.
We must act on the growing costs of health care and medicines and vaccines. We cannot afford waste in health care spending due to inefficiency.
Lack of access to palliative care is a major problem worldwide. Every year 40 million people need palliative care, 20 million at the end of life, yet only about 3 million are able to access the care they need.
As a consequence, 18 million people die with avoidable pain and suffering. This is due to multiple reasons including a lack of access to pain medications and other essential medicines, lack of health professionals trained in palliative care, few national level policies, weak government commitment, and a lack of funding for training and implementation.
Connor SR, The Worldwide Hospice Palliative Care Alliance, Journal of Pain and Symptom Management (2017), doi: 10.1016/j.jpainsymman.2017.03.020
In several countries, in collaboration with Human Rights Watch, country reports identified human rights abuses associated with a lack of palliative care.
Callaway MV, Connor SR, Foley KM, WHO Public Health Model: A Roadmap for Palliative Care Development, Journal of Pain and Symptom Management (2017), doi: 10.1016/ j.jpainsymman.2017.03.030
IKA SYAMSUL HUDA MZ, MD, MPH
https://twitter.com/drikasyamsul
"Beberapa
catatan kecil tentang perawatan paliatif dan akhir kehidupan sudah
tuliskan, semoga bisa dibaca oleh beberapa orang yang hidup pada masa
depan".
(Ika, 2020)
(Ika, 2020)
Okay kan, Bro!
IKA SYAMSUL HUDA MZ, MD, MPH
Dari Sebuah Rintisan Menuju Paripurna
https://palliativecareindonesia.blogspot.com/2019/12/dari-sebuah-rintisan-menuju-paripurna.html
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