Peradaban Pelayanan Kesehatan (yang Baru)
(Secuil Pemikiran yang Bukan Filosofis)
This is Puan yang Bijak
Palliative Care: 'My Care, My Right'
Should palliative care be rebranded?
Changing perceptions is
more important
than changing names
The Lancet Commission
goes further,
describing it
as a basic human right
in the face of
unrelieved suffering
affecting millions worldwide.
The 2018
Astana Declaration
endorses palliative care
as an essential component
of primary healthcare worldwide:
“Promotive,
preventive,
curative,
rehabilitative services,
and palliative care
must be accessible to all.”
Yet,
stigmatisation of
the term among
patients,
professionals,
and the public
continues to counter
positive messages about its benefits.
Kirsty Boyd
Sebastien Moine
Scott A Murray
Deborah Bowman
Nicole Brun
https://www.bmj.com/content/364/bmj.l881
BMJ 2019;364:l881 doi: 10.1136/bmj.l881
Domains of Palliative Care
Domain 1: Structure and Processes of Care
Domain 2: Physical Aspects of Care
Domain 3: Psychological and Psychiatric Aspects of Care
Domain 4: Social Aspects of Care
Domain 5: Spiritual, Religious, and Existential Aspects of Care
Domain 6: Cultural Aspects of Care
Domain 7: Care of the Patient Nearing the End of Life
Domain 8: Ethical and Legal Aspects of CareDomains of Palliative Care
Delivered in any care setting through the collaboration of many types of care providers.
ALL ABOUT PALLIATIVE CARE
http://www.geocities.ws/yapalindo/gmailpc/index.html
DNR dan Advanced Care Directive lainnya mestinya tidak dibuat ketika saat ajal sudah sedemikian dekat dan menunggu pasien tak mampu lagi menyampaikan kemauannya tentang perawatan lanjutan untuk dirinya. Maka Tim Paliatif perlu membimbing pasien dan keluarga untuk membuat Advanced Care Directive tersebut, yang terlebih dahulu dengan diskusi tentang DYING dan DEATH, serta perencanaan selanjutnya (Advanced Care Planning). Kalau Tim Paliatif tidak boleh mendiskusikan kemungkinan pasien akan meninggal dunia karena penyakit dan kondisinya, apakah dengan demikian pasien akan sembuh? Pasien mati bukan karena diskusi ACP dan ACD, tetapi memang akan mati karena penyakitnya sudah stadium terminal.
End-of-life
End-of-life is the timeframe during which a person lives with, and is impaired by, a life-limiting/ fatal condition, even if the prognosis is ambiguous or unknown. Those approaching end-oflife will be considered likely to die during the next 12 months.
End-of-life care
End-of-life care is care needed for people who are likely to die in the next 12 months due to progressive, advanced or incurable illness, frailty or old age. During this period, people may experience rapid changes and fluctuations in their condition and require support from a range of people, including health services, as well as family and carers.
https://ww2.health.wa.gov.au/~/media/Files/Corporate/general%20documents/Health%20Networks/Palliative%20care/WA%20End-of-life%20and%20Palliative%20Care%20Strategy%202018-2028.pdf
- End-of-life care is provided to people who have a medical condition that means they are likely to die within the next 12 months. Care services include physical, spiritual and psychosocial assessment, and care and treatment delivered by health professionals and ancillary staff.
- End-of-life care is not a single service provided by a particular profession and is provided in almost all settings where health care is provided, including in people’s homes.
- It typically encompasses a broad range of services, which can include advice and coordination of care, nursing and personal care, 24 hour hotlines, day hospice respite, emotional and practical support, and access to equipment.
- It can also include services for families and carers, such as bereavement support.
- End-of-life care does not include euthanasia, assisted suicide or voluntary assisted dying.
Examples of good practice for Muslims before death:
- ☛ Creating confidence and a close relationship, not only with the patient, but also with the main family carer/carers. This is particularly important if the family are relying on care at home.
- ☛ Learning and understanding some words in the language of the family - this is much appreciated by the families and helps create a bond. A simple Muslim greeting of Assalamu Alaikum goes a long way in breaking barriers and creating trust.
- ☛ Providing 'space' for relatives to visit in numbers and pray if necessary.
- ☛ Provision of Prayer artefacts in the form of mats, beads, incense sticks and a special compass for the direction of prayer towards Mecca. Some hospices, such as the Acorns in Birmingham, provide the direction on the window in the form of an arrow.
- ☛ Discussing dietary needs - whether food can be brought from home. Rigid laws regarding food being brought into hospices/hospitals may need reviewing in the light of special circumstances of death where a patient may not eat hospital food believing it not to be halal at a time when he is so close to meeting his Lord.
- ☛ After using the toilet Muslims usually use water for cleansing. Thus a jug or a plastic bottle kept within the confines of the toilet would help this practice.
- ☛ All religious books, such as the Qur'an, should be treated with the utmost respect by being kept on a separate shelf and only handled when covered with a clean piece of cloth/scarf.
- ☛ Appropriate audio tapes of the Qur'an should be made available for use if necessary. Advice from the Muslim Chaplain' attached to the hospital should be sought in setting up appropriate palliative services
- ☛ Nurses of the same sex as the patient should be involved with care which requires exposure of intimate areas
Euthanasia and Assistance to SuicideJangan jadikan pasien paliatif sebagai morfinis dan pecandu psikotropika lainnya;
Jangan memberikan morfin tanpa indikasi yang tepat dan tanpa pengawasan.
- ☛ When a person’s life is ending, we have an opportunity to accompany them till they breathe their last breath. We can ease their pain and suffering through good palliative care. We can love and care for them in such a way that they know they are not a burden to others.
- ☛ When we can all accept that dying is the final part of living, when we can reassure the dying person they are still loved as they are, not just as they were, and that their life still has meaning, then dying can be peace-filled and precious.
- ☛ Instead of providing the option to end life, we need to focus on the merits of end of life care and planning, and on making continuous improvements in these areas. There is much to be done to ensure that everyone in our community can die well.
- ☛ Legalised euthanasia and giving assistance to suicide are not the answers.
Complex needs may derive from the patient, carer or health care team and the help required may be intermittent or continuous, depending on the level of need and rate of disease progression.
Examples of complex levels of need include:
- a) Physical symptoms - uncontrolled or complicated symptoms, specialised nursing requirements, complex mobility or functioning issues.
- b) Psychological - uncontrolled anxiety or depression, cognitive or behavioural issues.
- c) Social - complex situations involving children, family or carers, finance issues, communication difficulties and patients with special needs.
- d) Spiritual - unresolved issues around self-worth, loss of meaning and hope, requests for euthanasia, unresolved religious or cultural issues.
- e) Ethical - conflicting interests involving ethical principles that impinge on decision-making by patient, family or care team.
- Futile treatment is any therapeutic act or course of action determined on the basis of current medical knowledge and experience to hold no reasonable promise for contributing to the patient’s well being or helping to achieve the agreed on goals of care.
- Futile treatment determined on the basis of current medical knowledge and experience to hold no reasonable promise for contributing to the patient’s well-being or of achieving agreed-on goals of care.
‘Earlier identification of people nearing the end of their life and inclusion on the register leads to earlier planning and better co-ordinated care’
(GSF National Primary Care Snapshot Audit 2010 )
https://www.goldstandardsframework.org.uk/cd-content/uploads/files/General%20Files/Prognostic%20Indicator%20Guidance%20October%202011.pdf
“Dying is not only a physical event – it is the conclusion of a life defined in its nature, content and connections within a society and its cultures that are every bit as important as the mechanism of how dying happens.”
https://www.rowcrofthospice.org.uk/
There is a need to support primary care providers in providing timely, consistent, and evidence based symptom management for palliative patients. The goal of these Adult Palliative Care Order Sets are to:
- improve recognition of the symptoms
- guide initial treatment with evidence based medications
- prevent the delay in symptom management due to tracking down orders
- prevent crisis by dealing with symptoms in a timely fashion
- treat crisis in a timely fashion when it does occur
- provide autonomy and capability of nurses to administer medications when necessary
Identification Palliative Care Needs
https://pharmacopallcare.blogspot.com/2020/09/identification-palliative-care-needs.html
1963 Dame Cicely Saunders introduces the idea of specialized care for the dying to the United States in a lecture at Yale University.
1967 Dame Cicely Saunders creates St. Christopher’s Hospice in the United Kingdom.
1975 The first National Symposium on Hospice Care is convened in New Haven, Connecticut.
1978 National Hospice Organization (NHO) is established to promote the concept of hospice care.
https://www.nhpco.org/hospice-care-overview/history-of-hospice/
In line with the World Health Organisation (WHO) definition of palliative care including the focus on early identification, quality of life and the role of carers and family, additional principles of a good death may include:
- To have access to support to enhance quality of life and to live as actively as possible until death.
- For family and close friends (primary carers and others involved in providing informal care and/or supporting the primary carer) to have access to a support to help them in their caring role and with their own psychosocial, spiritual and bereavement needs.
People are considered to be approaching the end of life when they are likely to die within the next 12 months, although this isn’t always possible to predict. This includes people whose death is imminent, as well as people who:
- have an advanced incurable illness such as cancer, dementia, or motor neurone disease
- are generally frail and have co-existing conditions that mean they are expected to die within 12 months
- have existing conditions if they are at risk of dying from a sudden crisis in their condition
- have a life-threatening acute condition cause by a sudden catastrophic event, such as an accident or stroke
People need more care as they get closer to death. Some wind up in hospital getting care, which might be avoided with better care in the community. In addition, some types of hospital care may no longer be beneficial, such as admission to an ICU, which may suggest that a patient is getting overly aggressive treatment in the last month of life.
https://www.cihi.ca/sites/default/files/document/access-palliative-care-2018-en-web.pdf
Advance care planning visits help you to:
BEFORE DEATH
Okay kan, Bro!
https://www.cihi.ca/sites/default/files/document/access-palliative-care-2018-en-web.pdf
- ☛ Palliative medicine is for anyone with serious illness, not just those who are dying. In other words, palliative care is for anyone with a condition that carries a high risk of mortality, has a negative impact on quality of life and daily function, and/or is burdensome in symptoms, treatments, or caregiver stress.
- ☛ Hospice is a subtype of palliative medicine that specifically focuses on end-of-life care for patients with a prognosis of 6 months or less.
- ☛ Although palliative care can be delivered by specialists for more complicated cases, palliative care is really the work of all physicians caring for patients with serious illness.
- ☛ There is a substantial evidence base that palliative care improves patient outcomes, including better symptom management and clearer communication, resulting in improved patient satisfaction. Palliative care and hospice also improve caregivers’ experiences.
https://pubmed.ncbi.nlm.nih.gov/32312403/
Palliative Care and End of Life Considerations for the Frail Patient
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7536652/
Advance care planning visits help you to:
- Learn about life-sustaining treatments
- Discuss your values, beliefs, and preferences
- Talk about your goals for medical treatments
- Decide what type of treatments you do or don’t want if you’re affected by a life-limiting condition
- Prepare legal documents called "advance directives"
Advance Care Planning and Advance Directives
Palliative Care Rights Include:
☛ Pain relief
☛ Symptoms control for physical and psychological symptoms
☛ Essential drugs for palliative care
☛ Spiritual and bereavement care
☛ Family centered care
☛ Care by palliative care professionals
☛ To receive home-based care when dying and to die in dignity
☛ To access legal services
☛ Treatment of disease and to have treatment withdrawn
☛ Information about diagnosis, prognosis, and palliative care services
☛ Name a health proxy for decision making
☛ Not to be discriminated against in the provision of care because of age, gender, national status, or means of infection.
Okay kan, Bro!
IKA SYAMSUL HUDA MZ
