PELAYANAN PERAWATAN PALIATIF DAN AKHIR MASA KEHIDUPAN

• 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.

What palliative care is not
Though the principles of palliative care are applicable in each of the following they are NOT palliative care services

•     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

Most emphatically palliative care is not euthanasia or physician-assisted suicide, both of which focus on death rather than on the quality of life.
https://hospicecare.com/what-we-do/publications/getting-started/4-introduction

• 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

• 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.

Asumsinya adalah kebanyakan pasien tidak tahu bahwa dirinya dalam masa akhir hayat.
Bila memang sudah tahu, maka pertanyaannya adalah apakah mereka mempunyai sesuatu pengharapan pada masa akhir hayatnya tsb.
Apakah kita dibutuhkan untuk mendukung dan menfasilitasi harapan-harapan terakhirnya tsb.
Harapan tsb tentunya bukan LAGI pada bagaimana menyembuhkan penyakitnya, atau bagaimana PASIEN bisa hidup jauh lebih lama lagi.
Namun MUNGKIN kita bisa sedikit membantu pasien dan keluarga membuat PERENCANAAN pada masa akhir hayatnya.
PASIEN boleh BAHAGIA dan percaya adanya TUHAN dan akan menemuiNYA di SURGANYA.
Bukan sekadar MST / Durogesic, Deksametason, dan Alprazolam,
SELEBIHNYA adalah bahwa tugas ini SANGATLAH BERAT dan bukan untuk main-main.
Salam paliatif.

• a the care needs of a patient with cancer can be classified under three domains: cancer management; symptom management and personal care needs; and the management of comorbidities. Considerable interactions exist between these domains and, therefore, interventions relating to one domain of care can influence the needs pertaining to another (arrows), which necessitates dynamic monitoring of the patient and modification of their care. For instance, chemotherapeutic agents can cause renal failure, which requires the initiation of different medical interventions and can also affect the ability of the patient to proceed with oncological investigations and treatments. Disease progression might affect the emotional state of the patient, which might, in turn, affect her adherence to treatment. To optimize patient outcomes, the oncology team, palliative-care team, primary-care team, and other subspecialists need to collaborate closely and communicate often.
• b Personal care needs can be further subdivided into acute issues, chronic issues, psychosocial issues, and existential and spiritual issues. Relevant expertise, close collaboration and interdisciplinary teamwork, and adequate resources are important requirements to comprehensively address these supportive-care issues, longitudinally.

• • 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.

• • 60% of deaths over age 60 occur in a hospital
• • Medical care is increasingly aggressive up to the last few days of life
• • Estimated that 11% of care in Intensive Care Units is futile
• • U.S Palliative care began in 1967 originally as a model of care for cancer patients, now provided for any age, and any stage of illness.
• • Addressing all distressing symptoms as opposed to only pain can lead to better outcomes.
• • Expanding palliative care to more than just hospice is essential.
• • Following cultural preferences regarding disclosure, advance planning, and decisional process improves patient and family satisfaction
• • Community-based palliative care is only available through hospice care, thus excluding a large number of patients.
• • Core components of palliative care include assessment of physical and psychological symptoms, support for spiritual distress, expert communication and coordination of care.
• • Spirituality is of high importance to patients however, less than half of physicians are open to discussing spiritual concerns
• • For health related decisions, U.S. culture known for emphasizing patient autonomy
• • Religion is used as a coping mechanism.
• • Minority cultures prefer family-based, physician-based or shared physician-and- family based decision making.
• • In the U.S. and Western Europe, cross-cultural differences occur along four dimensions: autonomy, beneficence, nonmaleficence and justice.
• • Education about patient’s differential spiritual needs is not part of most medical school curriculum, so physician’s are forced to depend on their own religious experiences in dealing with such issues.

Palliative Care Curriculum
https://bit.ly/CurriculumPC

• 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
https://bit.ly/IntegrationPC

1. 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.
    
2. Palliative care can benefit patients and their families from the time of diagnosis of any illness that may shorten life.
    
3. People with advanced illnesses don’t experience hunger or thirst as healthy people do. People who stop eating die of their illness, not starvation.
    
4. Palliative care can be provided wherever the patient lives – home, long-term care facility, hospice or hospital.
    
5. 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.
    
6. Pain is not always a part of dying. If pain is experienced near end of life, there are many ways it can be alleviated.
    
7. Keeping people comfortable often requires increased doses of pain medication. This is a result of tolerance to medication as the body adjusts, not addiction.
    
8. Appropriate doses of morphine keep patients comfortable but do not hasten death.
    
9. 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.
    
10. 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.

• 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.

• 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]).

https://www.jpsmjournal.com/article/S0885-3924(02)00468-2/fulltext

Palliative Care Outcome
https://bit.ly/PCOutcome

• 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.

• • 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).

1. a. Gejala fisik
2. b. Kemampuan fungsional (aktivitas)
3. c. Kesejahteraan keluarga
4. d. Spiritual
5. e. Fungsi sosial
6. f. Kepuasan terhadap pengobatan (termasuk masalah keuangan)
7. g. Orientasi masa depan
8. h. Kehidupan seksual, termasuk gambaran terhadap diri sendiri
9. 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
https://bit.ly/FinanceProblemsPC

•         symptom management guidelines
•         syringe driver compatibilities, and
•         opioid conversion tables

• 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

http://www.advancecaredirectives.sa.gov.au/

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

Palliative care is the active holistic care of individuals across all ages with serious health-related suffering due to 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.
https://palliativecareindonesia.blogspot.com/p/blog-page_6.html

• 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

Identification and Assessment Tools in Palliative Care Services
https://bit.ly/IdentificationToolsPC

• Hip fracture most commonly affects older adults and causes devastating consequences including pain, immobilization, functional decline, delirium, and death. Among those in the Medicare population who sustain hip fractures, 13% die within 3 months and 24%die within 12months. Of thosewhosurvive to 6months, only50% recover prefracture ability to performactivities of daily living.
• Hip fracture has a tremendously deleterious impact onthe survival and functional outcomes of the residents of longterm nursing homes. A palliative care approach is highly appropriate and should be initiated at the onset of hip fracture in the clinical care of this most vulnerable subset of older adults.

Pangan, Uang dan Teman bisa berubah menjadi Musuh-Musuh.