Peradaban Pelayanan Kesehatan (yang Baru)

(Secuil Pemikiran yang Bukan Filosofis)

This is Puan yang Bijak

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.

https://www.pc.gov.au/inquiries/completed/human-services/reforms/report/01-human-services-reforms-life.pdf

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

https://afizaazmee.files.wordpress.com/2010/02/3321786-palliative-care-in-islam.pdf

Jangan jadikan pasien paliatif sebagai morfinis dan pecandu psikotropika lainnya;
Jangan memberikan morfin tanpa indikasi yang tepat dan tanpa pengawasan.

Euthanasia and Assistance to Suicide

• ☛  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.

https://brisbanecatholic.org.au/assets/uploads/End-of-life-2017_A5-FA-print-hires_no-crops.pdf

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.

https://singaporehospice.org.sg/site2019/wp-content/uploads/National-Guidelines-for-Palliative-Care-Revised-Ed.-Jan-2015.pdf

• 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.

http://www.practicalbioethics.org/files/guidelines/02%20withholding_withdrawing_web2008.pdf

‘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/

Izinkan saya menerjemahkan "Good Death" atau "Khusnul Khatimah" dengan kata: "Kesejahteraan Kematian" = "Proses kematian yang sejahtera lahir batin".

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

https://www.northernhealth.ca/for-health-professionals/palliative-care-end-life-care#optional-forms   

Identification Palliative Care Needs
https://bit.ly/IdentificationPC

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.

https://northwestpalliative.com.au/resources/palliative-care-definitions/

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

https://hospicewhanganui.org.nz/our-services/what-end-of-life-care-involves/

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 and Advance Directives

https://bit.ly/AC-PAD

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"

https://www.essentiahealth.org/patients-visitors/advance-care-planning/

Sometimes decisions must be made about the use of emergency treatments to keep you alive. Doctors can use several artificial or mechanical ways to try to do this. Decisions that might come up at this time relate to:

•     CPR (cardiopulmonary resuscitation)
•     Ventilator use
•     Artificial nutrition (tube feeding) and artificial hydration (IV, or intravenous, fluids)
•     Comfort care

https://www.nia.nih.gov/health/advance-care-planning-healthcare-directives

In the event I become terminally ill and I am unable to understand, make or communicate my wishes, I direct that my life be prolonged as long as possible using all possible treatments within the limits of generally accepted health-care standards, with the following exceptions (initial those treatments – if any – I do not want, even if they could prolong my life):

I DO NOT WANT the treatments initialed below:
_____ heart-lung resuscitation (CPR)
_____ ventilator (breathing machine)
_____ dialysis (kidney machine)
_____ surgery
_____ blood transfusions
_____ chemotherapy or radiation treatment
_____ artificial nutrition or hydration through a conduit (tube feeding)
_____ antibiotics

https://www.dhss.delaware.gov/dsaapd/files/advancedirective.pdf

Advance Care Planning (ACP) is a process of communication for planning for your future medical decisions. To be effective, this process includes:

• Reflection on your goals, values, and beliefs (including cultural, religious, spiritual, and personal)
• Understanding of possible future situations and decisions
• Sharing of these reflections and decisions with those who might need to carry out the plan

https://www.valleymed.org/Patients-and-Visitors/Patient-Rights-And-Care-Planning/Advance-Care-Planning/

Types of advance directives

• Power of attorney for health care – Names who can make health care decisions for you when you cannot.
• Declaration to physicians (living will) – Gives instructions about the care you’d like to receive if you cannot communicate your wishes.
• Do-not-resuscitate (DNR) order – Lets care providers know that they should not perform cardiopulmonary resuscitation (CPR) if your breathing or heart stops; must be signed by your doctor.

Advance care planning is recommended for everyone 18 years and older, regardless of health condition. After you complete your advance directive, give copies to your doctors and a loved one.
https://www.prohealthcare.org/patients-families/advance-care-planning/

• In the event that your heart stops beating and you stop breathing, health care providers will normally perform cardiopulmonary resuscitation (CPR) to try to restart your breathing and heartbeat. However, you may decide that you do not want CPR performed. In this case, you may ask for a Do Not Attempt Resuscitation (DNR) or a Portable-DNR (for use outside of a hospital or nursing home facility) order to be written. The differences between a DNR and an advance directive are: an advance directive is not a medical order, even though it is a legally recognized document; a DNR order is a medical order; a DNR order applies only if your heart stops beating and you stop breathing, while an advanced directive deals with many other medical issues and decisions, such as whether to provide medically assisted feeding or hydration. You may want to include your wishes about DNR orders in your advance directive.

• There is an attempt to provide everyone with CPR unless they indicate otherwise. Attempts at CPR are rarely successful when someone is very frail or has a serious illness, and both failed and successful attempts at CPR may often cause additional suffering. Talking with your doctor or other health providers can help you understand the potential benefits and burdens of CPR and whether a DNR or Portable-DNR order is your preferred choice. A DNR only refers to CPR and does not mean that all other treatments (e.g., pain relief, comfort care, etc.) are stopped.

https://healthynh.com/images/PDFfiles/advance-directives/2017_ACPG_Final.pdf

With recent technological advances, sometimes we can only prolong the process of dying.
Bobillo-Perez et al. BMC Palliative Care (2020) 19:74
https://doi.org/10.1186/s12904-020-00575-4

The goals of advance care planning are four-fold. These goals reflect respect for the principles of patient autonomy (right to self-determination in light of personal interests including goals, preferences, and concerns for one’s family), beneficence (promoting good) and non-maleficence (avoiding harm). In the event of decisional incapacity, they are to:

• Minimize the burden of decision making on the spokesperson and/or family members.
• Reduce the likelihood of conflicts between a patient’s spokesperson, family members and health care providers, and
• Minimize the likelihood of over- or under-treatment,
• Maximize the likelihood that medical care serves the patient’s goals,

http://depts.washington.edu/bhdept/ethics-medicine/bioethics-topics/detail/54


How can I be sure the medical staff knows that the patient has a DNR (Do Not Resusitate) order? Tell the doctor in charge as soon as the patient or person making healthcare decisions decides that CPR or other life-support procedures should not be performed. The doctor will then write this on the patient’s chart using terms such as DNR (Do Not Resuscitate), DNAR (Do Not Attempt to Resuscitate), AND (Allow Natural Death), or DNI (Do Not Intubate). DNR forms vary by State and are usually available online.
https://www.nia.nih.gov/health/understanding-healthcare-decisions-end-life

• However, if you had suffered a major stroke or heart attack and were unconscious and not able to communicate, and were not expected to get better, the doctors may consider that your Advance Care Directive may apply in that situation.
• Pain relief and managing discomfort are always important. If your Advance Care Directive states you want to die a natural death, you will still be given pain relief if needed.

https://www.health.nsw.gov.au/patients/acp/Publications/acd-form-info-book.pdf


Types of Care: the meaning of "Palliative"
It is important to differentiate:

• palliative care principles which apply to all care, whatever the disease suffered by a patient
• palliative techniques or therapies include medical and surgical therapies or procedures (e.g. stenting, paracentesis, internal fixation of fractures and radiotherapy) that are employed to palliate symptoms and ease suffering but are only a small part of the spectrum of care known as palliative care
• specialist palliative care in some countries is practised in units operated exclusively for palliative care by doctors and nurses who are accredited specialists in palliative care. Whether such specialisation is important or essential is something that can only be debated in the context of national needs and resources.

https://web.archive.org/

Specialist Palliative Medicine
https://bit.ly/SpecialistPallMed

An Assessment and Outcome Measure for Palliative Care

Quality of life (QOL) in the context of advanced, progressive, incurable illness, is defined as the subjective experience of an individual living with the interpersonal, psychological and existential or spiritual challenges that accompany the process of physical and functional decline and the knowledge of impending demise. A person’s QOL can range from suffering, associated with physical distress and/or a sense of impending disintegration, to the experience of wellness and personal growth arising from the completion of developmental work and the mastery of developmental landmarks.
https://irabyock.org/writings/missoula-vitas-quality-of-life-index-mvqoli/

An Assessment and Outcome Measure for Palliative Care
Quality of life (QOL) in the context of advanced, progressive, incurable illness, is defined as the subjective experience of an individual living with the interpersonal, psychological and existential or spiritual challenges that accompany the process of physical and functional decline and the knowledge of impending demise. A person’s QOL can range from suffering, associated with physical distress and/or a sense of impending disintegration, to the experience of wellness and personal growth arising from the completion of developmental work and the mastery of developmental landmarks.
Byock and Merriman, Pall. Med., 12:231-244, 1998
https://web.archive.org/web/20200418040250/https://irabyock.org/writings/missoula-vitas-quality-of-life-index-mvqoli/

As a group, we have targeted the following activities for development:

• → Consultation group;
• → Reading group (e.g., journal articles, books);
• → Presentations by Palliative and End of Life Care members on their own research or writings;
• → Consultation to other health care providers working in palliative and end-of-life care and research;
• → Educational opportunities for other health care providers working in palliative and end-of-life care and research; and
• → Coordinating with community organizations to provide educational opportunities for the general public about palliative and end-of-life care and concerns.
• → Next project is to prepare a list of palliative and an end-of-life care resources (e.g., forms, literature, organizations) that we can have easily available to us in order to better serve our clients.

https://wspapsych.org/endlife.php

The following are among the risks and harms of tube feeding:

• Pain and other complications (eg, infection, bleeding) directly associated with placement of tube
• Increased risk of aspiration
• Increased risk of pressure ulcers
• Gastrointestinal symptoms from feeding (eg, diarrhea, constipation, reflux)
• Physical and chemical restraints to prevent patient from pulling out feeding tube
• Fluid overload leading to increased pulmonary or peripheral edema, upper airway secretions
• Can increase the perception of hunger

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4369630/

Palliative care enhances the quality of life of people with a life-limiting illness.
It may include:

• Help with decisions about treatments
• Expert medical care to help with pain and other symptoms at home or in hospital
• End-of-life care
• Social, psychological, emotional and spiritual support
• Support for family, friends and caregivers
• Information about financial, legal and other services
• Bereavement support

https://library.nshealth.ca/PalliativeCare

When a Muslim is near death, those around him or her are called upon to give comfort, and reminders of God's mercy and forgiveness. They may recite verses from the Qur'an, give physical comfort, and encourage the dying one to recite words of remembrance and prayer.

It is recommended, if at all possible, for a Muslim's last words to be the declaration of faith: "I bear witness that there is no god but Allah.”.

https://hospicefoundation.ie/wp-content/uploads/2020/04/By-your-side-Muslim-Prayers-.pdf

Patients are considered to be “approaching the end of life” when they are likely to die within the next 12 months. This group of patients encompasses those:

1. 1. Where death is imminent
2. 2. Who have advanced, progressive, incurable conditions
3. 3. Who have general frailty and multi-morbidity
4. 4. Suffering an acute crisis in a longer term condition
5. 5. With life threatening acute conditions

“End of life care” focuses in particular on patients at the end of life, but the delivery of good end of life care relies heavily on the recognition that a patient is approaching the end of life. Without this recognition, it is less likely that all the necessary elements of communication and care will take place in the patient’s final days or weeks to make their death as comfortable as possible.
https://www.ouh.nhs.uk/about/trust-board/2016/july/documents/TB2016.69-end-of-life-strategy.pdf

Clinical Practice Group (CPG) Guidelines
The following documents have been developed by the Gippsland Region Clinical Practice Group to assist health professionals and palliative care service providers develop their own policies and procedures around palliative care.
Please find below a list of our current available documents.
http://www.grpcc.com.au/health-professionals/resources/palliative-care-resources/

Multiple Choice Questions
Click on a link below to access the MCQ(s) for that chapter. Select one option to the question and click 'Submit answer' to check your answer.
http://www.ataglanceseries.com/nursing/palliativecare/mcqs.asp

Self-assessment Cases
Select a case from the list below. Each case includes questions for self-test.
http://www.ataglanceseries.com/nursing/palliativecare/case.asp

It is important to coordinate this effort through regional and national associations, to reduce duplication and unnecessary work. IAHPC is also working with Age Platform Europe.
The Seven Guiding Questions, and help in finding answers
https://eapcnet.wordpress.com/

Dermatological Symptoms in Palliative Care
https://bit.ly/DermatologicalPC

PALLIATIVE CARE SCREENING TOOL
Check each criteria that applies to the patient

• ☐ New diagnosis of life limiting illness for symptom control, patient/family support
• ☐ Patient has progressive metastatic cancer
• ☐ Patient has advancing dementia including; difficulty swallowing, multiple infections, and decreasing intake
• ☐ Team/patient/family needs coordination of care
• ☐ Patient has progressive declining ability to complete activities of daily living without reasonable expectation for improvement
• ☐ Patient has weight loss/failure to thrive
• ☐ High Utilizer admission from a long-term care facility
• ☐ Patient has four or more hospitalizations for illness within twelve months
• ☐ Patient has difficult to control physical symptoms
• ☐ Patient/family/physician faces uncertainty regarding prognosis
• ☐ Patient/family/ physician faces uncertainty regarding pros and cons of treatment options
• ☐ Patient or family requests for treatment with low probability for success
• ☐ Patient/family/care team needs help with advance care planning (e.g., DNR conflicts)
• ☐ Patient/family/care team needs help with conflicts regarding the use of non-oral feeding/hydration in cognitively impaired, seriously ill, or dying patients
• ☐ Patient/family/physician request information regarding hospice appropriateness
• ☐ Patient or family has uncontrolled psychological, emotional, or spiritual distress
• ☐ Patient admitted due to side effects of chemotherapy

If one box is checked the patient is a candidate to be referred to the attending for a Palliative Care Consult.
https://web.archive.org/web/20200621190513if_/https://dev.carecompassnetwork.org/wp-content/uploads/sites/4/2017/03/CGC-CG-09-Clinical-Triggers-for-PCMH-Referral-to-Palliative-Care_UPDATE.pdf

The palliative doctor leads the team, working closely with your nurses, who will have regular contact with you. Most of the team members receive special training in palliative care.

Your team will

• prescribe treatments to control pain and other uncomfortable symptoms
• assist with difficult medical decisions, helping you weigh the pros and cons of various treatments
• coordinate care with your other doctors and help you navigate the often confusing healthcare system
• guide you in making a plan for living well, based on your needs, concerns, and goals for care
• provide you and your loved ones emotional and spiritual support and guidance.

https://palliativedoctors.org/team/team-approach

Members of the hospice and palliative care team can include

•     You
•     Your loved ones
•     Palliative doctor
•     Your other doctors
•     Nurse
•     Social worker
•     Pharmacist
•     Chaplain
•     Physical therapist
•     Dietician
•     Volunteers

https://palliativedoctors.org/team/team-approach

• Some people find that music, humor or distraction, hot or cold packs, or exercise can really help relieve their pain or lessen their symptoms.
• Other complementary methods include massage therapy, biofeedback, therapeutic touch, chiropractic manipulation, pet therapy, acupuncture, hypnosis, guided imagery, and cognitive and behavior therapies.

https://palliativedoctors.org/team/complementary

Questions the palliative doctor and other team members may ask include

• How can we help you live well?
• What makes you happy?
• What activities or experiences would you like to do or continue doing so that you feel you are living well?
• Are there any special events or activities that you are looking forward to?
• What are your fears or worries about your illness or medical care?
• What needs or services would you like to discuss?
• What do you hope for your family and loved ones?
• What keeps you going when life’s challenges seem overwhelming?
• Do you have religious or spiritual needs that are important to you?
• In what way do you feel you could make this time especially meaningful to you?
• If you have to choose between living longer and living more comfortably or energetically, how would you approach this balance?

https://palliativedoctors.org/start/getting-started#plan

Pharmacological interventions
Optimal symptom control in the last few days of life requires considerable skill and may be challenging for even an experienced palliative care clinician. There may be a number of concurrent clinical problems as well as an underlying desire to get the care right for the dying person and those important to them. Poorly controlled symptoms can lead to considerable distress as they interfere with the ability to engage in other important activities including saying goodbye to those important to the dying person and putting financial affairs in order. Many of the medications used to manage these symptoms may cause a degree of sedation, or other side effects.
https://www.ncbi.nlm.nih.gov/books/NBK355997/

"People with serious illness have priorities besides simply prolonging their lives. Surveys find that their top concerns include avoiding suffering, strengthening relationships with family and friends, being mentally aware, not being a burden on others, and achieving a sense that their life is complete."
https://diigo.com/0hucb3

Emotional and Communication Support

Health professionals providing palliative care must be sensitive to the reality that depression, anxiety, and sleep disorders may be present and may cause physical or emotional symptoms. Furthermore, unique psychosocial issues accompany terminal illness. Emotional responses such as denial, anger, sadness, acceptance, and hope may vary from day to day and may differ between the client and the various members of the family.
https://www.nursece.com/courses/113-palliative-care-essentials

The differences between palliative care and end-of-life care include:

•     Palliative care is provided to seriously ill patients coping with pain, distressing symptoms, stress or other serious side effects of their illness or treatments meant to cure it.
•     End-of-life care is provided to seriously ill patients who have a prognosis of six months or less, in their doctor’s best judgment, if the disease follows its normal course.

•     Palliative care is for anyone living with a serious illness at any stage,
•     while end-of-life care is for the last few weeks or months of life.
•     Meaning palliative care is intended to help patients live more comfortably with their ongoing condition.

•     Palliative care is for anyone seeking curative treatments,
•     while end-of-life care is for someone who has decided to forgo curative treatments and seek comfort care in the last few months, weeks, or days of their life.

•     Palliative care is provided during a consultation in an office setting or a visit in the hospital,
•     while end-of-life care is provided in your home, nursing home or assisted living, or inpatient hospice facility.

•     Palliative care is provided by a palliative-trained, board-certified physician or nurse practitioner.
•     Hospice care is provided by a board-certified physician, nurse practitioner, nurse, social worker, spiritual support counselor, certified home health aide, and volunteer.

https://samaritannj.org/resources/palliative-care-vs-end-life-care/

Here are seven of the most frequently asked questions surrounding palliative care services.
Palliative care offers several benefits to patients who have been diagnosed with a chronic medical condition.
https://ardenthapc.com/

Palliative care is the treatment, care and support for people from the point of diagnosis of a life-limiting (terminal) illness.

End of life care involves treatment, care and support for people who are nearing the end of their life. It’s part of palliative care.

https://www.mariecurie.org.uk/professionals/palliative-care-knowledge-zone/proving-good-quality-care/a-guide-to-end-of-life-services


Neurological patients differ from oncological patients with respect to their symptoms, fluctuating disease course, varied prognoses, and difficulty in identifying end-of-life stage. Knowledge of different neurological conditions is important to practice neuropalliative care appropriately. Growth of neuropalliative care services must begin with the neurologist at the center of the multidisciplinary team. Neurologists need to be trained in communication skills and advance care planning, and must be aware of end-of-life care, do-not-resuscitate policies, and withdrawal of life support measures.
https://www.thieme-connect.com/products/ejournals/pdf/10.1055/s-0038-1675891.pdf

Neurological and Neuromuscular Symptoms in Palliative Care
https://bit.ly/NeurologicalPC

“In my last year of life, help me live well until I die.”

https://www.nextstageradicals.net/blog/

Final days
Following the phasing out of the Liverpool Care Pathway in 2014, the National Leadership Alliance for the Care of Dying People has published guidance that is summarised in the leaflet ‘Priorities of Care for the Dying Person’. The key recommendation was a move away from a ‘pathway’ approach, and a move towards developing individual care plans for dying people.
https://bit.ly/3cDYayS

Each individual must have an individual care plan according to their needs. The plan should be discussed openly with the person and those identified as important to them. This plan must be reviewed on a daily basis.
https://www.somersetccg.nhs.uk/

THE “WORK” OF DYING
Many patients imagine that death comes suddenly, but for many, the knowledge that one's death is imminent comes first. Those with this awareness often must complete certain tasks to allow a peaceful death such as offering forgiveness, being forgiven, acknowledging regrets, finding closure in professional and community relationships, and saying goodbye to family and friends.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3241069/

Family Meeting: (pada perawatan paliatif dan akhir kehidupan)


THE DISCUSSION
Appropriate setting

• Discussions should be held in person and not by telephone, except when face-to-face meetings are not possible for geographic reasons
• Privacy, prevent interruptions (leave your pager/mobile with someone else)
• Sitting down so the patient and relative can see your face, not standing over the patient’s bed
• Allow enough time
• The patient has at least one family member or friend for support

https://sites.google.com/view/principles-of-medical-ethics/communication-with-patients

A goals of care discussion between a patient (or his/her Substitute Decision Maker if the patient lacks capacity) and healthcare provider(s) addresses the patient’s goals for his or her care in the context of healthcare consent and decision-making in advanced illness. The purpose of these discussions is to outline the patient’s values, beliefs, wishes, perception of quality of life and what he or she characterizes as meaningful and important. Other elements include the patient’s understanding of current health conditions, prognosis, and likely course of events if his or her goals of care are applied to potential treatment decisions. The goals of care discussion provides the foundation for decision-making and will often include the development of (and obtaining informed consent to) a plan of treatment.
https://www.ontariopalliativecarenetwork.ca/

Prognostication in Palliative Care
https://bit.ly/PrognosticationPC

Palliative Care for Adults REVISION DATE: JANUARY 2020/SIXTH EDITION
A useful definition of “bad news” is information that “results in a cognitive, behavioral, or emotional deficit in the person receiving the news that persists for some time after the news is received.” (Ptacek, 1996) Another definition of bad news is “any news that drastically and negatively alters the patient’s view of her or his future.” (Buckman, 1984) Implicit in these definitions is that a terminal diagnosis is not the only form of bad news; it may also refer to disclosing the diagnosis of a serious chronic condition such as multiple sclerosis, ultrasound-verified fetal demise to a pregnant woman, and other scenarios.
https://www.icsi.org/guideline/palliative-care/

Support for family carers is a core function of palliative care service provision. Family meetings provide an opportunity to enhance the quality of care provided to palliative care patients and their family carers. The clinical guidelines outlined here offer a framework for preparing, conducting and evaluating family meetings.

Family meetings should not be used as an opportunity for health care professionals to debate a patient’s medical status; in this situation, a case conference should be convened prior to the family meeting.

Family meetings should not be saved for ‘crisis’ situations. Instead, a preventative approach is advocated where issues are anticipated before they become major dilemmas. Hence a proactive rather than reactive approach to care is fostered.

https://web.archive.org/

Your feelings

• shock
• fear
• anger
• resentment
• denial
• helplessness
• sadness
• frustration
• relief
• acceptance

You may also feel isolated and alone, even if you have family and friends around you.
You might not experience all of these feelings and, if you do, they will not necessarily come in any particular order. Whatever you feel, you do not have to go through it alone.
https://www.nhs.uk/conditions/end-of-life-care/coping-with-a-terminal-illness/

The seven stages of grief are another popular model for explaining the many complicated experiences of loss.
These seven stages include:

1. Shock and denial. This is a state of disbelief and numbed feelings.
2. Pain and guilt. You may feel that the loss is unbearable and that you’re making other people’s lives harder because of your feelings and needs.
3. Anger and bargaining. You may lash out, telling God or a higher power that you’ll do anything they ask if they’ll only grant you relief from these feelings.
4. Depression. This may be a period of isolation and loneliness during which you process and reflect on the loss.
5. The upward turn. At this point, the stages of grief like anger and pain have died down, and you’re left in a more calm and relaxed state.
6. Reconstruction and working through. You can begin to put pieces of your life back together and carry forward.
7. Acceptance and hope. This is a very gradual acceptance of the new way of life and a feeling of possibility in the future.

https://www.healthline.com/

Recognising dying is the first step in terminal care management. The terminal phase may be hours or days. It is important to plan for symptoms and changing circumstances. Anticipatory prescribing can prevent crises and unplanned admission to hospital supporting home death. 

The needs of families during the dying process and after death should be clarified and discussed.
https://www.caresearch.com.au/caresearch/tabid/3429/Default.aspx

Changing the way we deliver services will take collaboration and careful planning from all partners.
https://www2.gnb.ca/

FAMILY MEETING:

The Family Meeting Part 1 – Preparing
https://www.mypcnow.org/fast-fact/the-family-meeting-part-1-preparing/

The Family Meeting Part 2 – Starting the Conversation
https://www.mypcnow.org/fast-fact/the-family-meeting-part-2-starting-the-conversation/

The Family Meeting Part 3 – Responding to Emotion
https://www.mypcnow.org/fast-fact/the-family-meeting-part-3-responding-to-emotion/

The Family Meeting Part 4 – Causes of Conflict
https://www.mypcnow.org/fast-fact/the-family-meeting-part-4-causes-of-conflict/

The Family Meeting Part 5 – Helping Surrogates Make Decisions
https://www.mypcnow.org/fast-fact/the-family-meeting-part-5-helping-surrogates-make-decisions/

The Family Meeting Part 6 – Goal Setting and Future Planning
https://www.mypcnow.org/fast-fact/the-family-meeting-part-6-goal-setting-and-future-planning/


Dame Cicely Saunders (1918 - 2005), founder of the modern hospice movement, drew attention to the profound impact that the experience of death has on those who witness it, with the statement “How people die remains in the memory of those who live on”.

‘Every person in the last days of their life regardless of who they are, where they are or who cares for them has the right to receive high quality care given with compassion and skill.
Every person in the last days of their life regardless of who they are, where they are or who cares for them should expect that their loved ones receive high quality support given with compassion and skill.‘
Kat Collett, Consultant in Palliative Medicine, Lincolnshire. 

Principles of Prescribing in Palliative care
https://bit.ly/PrescribingPC

Five priorities of care from the LACDP document ‘One Chance to Get it Right’

1. 1.     The possibility that a person may die within the coming days and hours is recognized and communicated clearly, decisions about care are made in accordance with the person's needs and wishes and these are reviewed and revised regularly
2. 2.     Sensitive communication takes place between staff and the person who is dying and those important to them
3. 3.     The dying person, and those identified as important to them, are involved in decisions about treatment and care
4. 4.     The people important to the dying person are listened to and their needs are respected
5. 5.     Care is tailored to the individual and delivered with compassion—with an individual care plan in place

https://academic.oup.com/bmb/article/112/1/5/2747684

Care given to people who are near the end of life and have stopped treatment to cure or control their disease. End-of-life care includes physical, emotional, social, and spiritual support for patients and their families. The goal of end-of-life care is to control pain and other symptoms so the patient can be as comfortable as possible. End-of-life care may include palliative care, supportive care, and hospice care.
https://www.cancer.gov/publications/dictionaries/cancer-terms/def/end-of-life-care


Nothing can erase the pain of facing the loss of someone you love, but end of life care can help support the whole family and allow your loved one to pass on in comfort and dignity.
https://myhometouch.com/end-of-life-care

Studies show hospice care often is not started soon enough. Sometimes the doctor, patient, or family member will resist hospice because they think it means “giving up” or that there’s no hope.
https://www.cancer.org/treatment/end-of-life-care/hospice-care/what-is-hospice-care.html

• End of life care is support for people who are in the last months or years of their life.
• End of life care should help you to live as well as possible until you die, and to die with dignity.
• The people providing your care should ask you about your wishes and preferences.

https://www.nidirect.gov.uk/conditions/end-life-care-and-palliative-care


Palliative care is provided in the community, in hospices and in hospitals.

•     It can be provided by all health care professionals, including GPs and district nurses – supported where necessary by specialist palliative care services.
•     Hospices are the main providers of specialist palliative care services for people living in the community.

https://www.health.govt.nz/your-health/services-and-support/health-care-services/palliative-care


It can be really difficult to talk openly to family and friends about feelings and thoughts about the future. An experienced professional can help both the patient and family and friends, by listening and advising.
https://patient.info/treatment-medication/palliative-care-leaflet

Symptom Assessment Scale (SAS) 
The Symptom Assessment Scale is a patient-rated tool that clinicians use to measure the amount of distress caused by seven of the most common symptoms in palliative care. Clinicians need to know how bothered, worried or distressed patients are by each of the systems in order to effectively manage their pain. A clinician asks the patient to rate their distress relating to each of the seven symptoms on a scale from 0 to 10, 0 being absent and 10 being severe.
https://ahsri.uow.edu.au/pcoc/assessment-tools/index.html

The PA Toolkit is a set of clinical, educational and management resources designed to guide and support RACFs to implement a comprehensive, evidence-based, person-centred and sustainable approach to palliative care for appropriate residents.
https://www.caresearch.com.au/caresearch/tabid/3583/Default.aspx#

End of life care describes the care and treatment delivered by health professionals, carers and other support staff to a person who is living with a life-limiting illness such as chronic or malignant disease. A person is considered to be ‘approaching the end of their life’ if they are likely to die within the next 12 months.
https://bit.ly/3bz06Hx

Quality of care can be checked, compared, and improved by assessing responses from bereaved next-of-kin.The “Care of the Dying Evaluation” (CODE™) questionnaire, validated in German in 2018 (CODE-GER), examines quality of care for the patient and support of next-of-kin. Table 2 Items per subscales, scales, and subscale scores: https://link.springer.com/article/10.1007/s00520-020-05465-2/tables/2

• Doctors do not have to give you treatment just because you ask for it. Doctors decide whether treatment is medically appropriate for your condition and then you decide whether or not you want that treatment.
• Dokter tidak harus memberi Anda perawatan hanya karena Anda memintanya. Dokter memutuskan apakah perawatan medis sesuai untuk kondisi Anda dan kemudian Anda memutuskan apakah Anda ingin perawatan itu atau tidak.

https://compassionindying.org.uk/




‘How people die remains in the memory of those who live on’
Dame Cicely Saunders, Founder of the modern hospice movement

The term “hospice palliative care” was coined to recognize the convergence of hospice and palliative care into one movement that has the same principles and norms of practice.

The practice of hospice palliative care in Canada began in the 1970s and has evolved rapidly, adapting to keep pace with changes in people’s experience of illness and dying. Because of medical advances, people now live much longer – years, even decades – with life-limiting illnesses. Today, they must deal with many complex issues:

• How can they get relief from their symptoms?
• How can they carry on with life as they have known it?
• How will the illness affect their roles and relationships?
• What can be done to change the illness experience?
• How can they restore or maintain their capacity for meaningful experiences that enhance quality of life?

https://www.chpca.ca/wp-content/uploads/2019/12/norms-of-practice-eng-web.pdf

A living will is a form which lets you refuse medical treatments that you do not want to be given in the future. It is also known as an Advance Decision or Advance Directive.
https://compassionindying.org.uk/

A terminally ill airforce veteran was granted his last wish of skydiving.
Image:  https://www.storypick.com/wp-content/uploads/2017/03/7-last.jpg
These 20 Dying Wishes Of People Will Leave You With An Unexplainable Pain In Your Heart!
https://www.storypick.com/dying-wishes/


Advance care planning, end-of-life discussions, and early palliative care involvement have been shown to reduce aggressive care at the end-of-life https://bit.ly/2LvG4TN

HOPE IN THE TERMINALLY ILL
Interventions that engender hope

• Adequate control of symptoms
• Fostering and developing interpersonal connectedness and relationships
• Assistance in attaining practical goals
• Exploring spiritual beliefs
• Supporting and identifying personal attributes, such as determination, courage, and serenity
• Encouraging lightheartedness when appropriate
• Affirming worth by treating the patient as a valued individual
• Recalling uplifting memories with life review

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1071019/

Advance Care Planning is a process of thinking about and sharing your wishes for future health and personal care. It can help you tell others what would be important if you were ill and unable to communicate.
https://www.advancecareplanning.ca/

Advance Care Planning and Health Care Consent: Making Your Wishes Known

https://www.hpco.ca/acp/

It's best to do these things before you're in crisis and while you're still able to. Here are some things you can do to shape the future you want:

• Write an advance care plan to make sure your health care wishes are respected.
• Decide who will make health care decisions on your behalf if a time comes when you can't make them for yourself.
• Know what options you have when you reach the end of life.
• And don't forget to communicate. Talk with your family and your health professionals. Your plans will do no good if no one knows about them.

https://www.healthlinkbc.ca/health-topics/aa114595

Advance care planning is designed to help anyone, healthy or sick, communicate their wishes for medical treatment. This planning process will clarify what your family and friends need to know if you become unable to make health care decisions for yourself.
https://www.allinahealth.org/medical-services/chronic-and-advanced-illness/advance-care-planning

Advance care planning is not about decisions. It is about preparing you,and your future substitute decision maker(s), for a time when you may not be able to make your own health or personal care decisions because of your lack of mental capacity.

Advance Care Planning is a process that helps you prepare to make future health-care decisions.

• You plan for careers, vacations, weddings, and retirement.

• Why not plan for your future health care?

• Advance Care Planning helps you plan for your future health care and get care aligned with your wishes.

https://bc-cpc.ca/cpc/all-resources/individuals/advance-care-planning/

An advance care planning discussion with a person includes:

•     The person and/or family’s understanding of their illness/medical condition
•     The person and/or family’s concerns or worries about any aspect of end-of-life
•     The person’s values, beliefs, wishes, preferences and/or personal goals for care
•     The person’s preferences for types of care/treatment that might be beneficial in the future

Person-centred care means taking the time to find out what the person wants to know. It also means finding out what their wishes and preferences are regarding their end-of-life care.
 
Advance Care Planning should ideally happen before the person is admitted to hospital or a nursing home. However all too often, they do not.
 
Hospital and nursing home staff have an important role, especially as advance care planning is a key part of person-centered care.
https://bit.ly/2WS1pwa


“Health and care staff must make time to talk with dying people, their families and those identified as important to them, including carers. They must listen, respond sensitively to their issues and concerns, provide information in a way that meets their communication needs and check that explanations and information are understood.”

“The content and outcome of all discussions must be documented and accessible to all those involved in the person’s care. This includes conversations about prognosis, goals of treatment and care plans at each point in time, and particular concerns that the person, their family and those identified as important to them have expressed.”

Food and drink can be important to people’s comfort and psychological wellbeing, even where their physical needs for hydration and nutrition are met through other means.
NACEL/2019/

NICE guideline provides recommendations on symptom management (pain, breathlessness, nausea and vomiting, anxiety, delirium, agitation and noisy respiratory secretions) and maintaining hydration in adult patients receiving palliative care during the last days of life (two to three).
The recommendations included in this guideline include:
    1. Recognising when people are entering the last few days of life
    2. Communicating and share decision-making
    3. Clinically assisted hydration
    4. Medicines for symptom management
    5. Anticipatory prescribing
https://www.nice.org.uk/guidance/ng31

An outcome is ‘the change in a patient’s current and future health status that can be attributed to preceding healthcare’.
Outcome measurement involves the use of a valid and reliable measure to establish a patient’s baseline health status and then evaluating changes over time against that baseline. Outcome measurement is an important step to measure the value of health care provided.

https://epub.ub.uni-muenchen.de/43641/1/EAPC_White_Paper.pdf


The Core Curriculum contains the most important Fast Facts within a particular palliative care domain or speciality area. These can be used to supplement a Generalists Palliative Care training initiative, for on-boarding new palliative care specialists, for health professional trainees working in hospice and palliative medicine or for “just in time” education to meet a clinical problem.
https://www.mypcnow.org/fast-facts/core-curriculum/

A Working Definition of End of Life Care
End of life care is care that:

Helps all those with advanced, progressive, incurable illness to live as well as possible until they die. It enables the supportive and palliative care needs of both patient and family to be identified and met throughout the last phase of life and into bereavement. It includes management of pain and other symptoms and provision of psychological, social, spiritual and practical support.

Source: National Council for Palliative Care 2006
The End of Life Care Strategy 2008
https://web.archive.org/web/20180417164651if_/http://www.ncpc.org.uk:80/sites/default/files/AandE.pdf

acute pain - usually due to tissue injury and diminishes within 3-6 months as tissue heals.
chronic pain - persists for > 1 month after tissue heals, is due to ongoing tissue damage (such as with joint disease), or otherwise persists or becomes recurrent over > 3 months.
breakthrough pain - transitory increase or flare of pain in otherwise stable or well-controlled acute or chronic pain.
incident pain - type of breakthrough pain due to specific activities or factors.
end-of-dose pain - pain that consistently occurs before next scheduled dose of regularly scheduled analgesic

total pain - pain experience based on interaction of physical, social, spiritual, and psychological factors

https://www.dynamed.com/management/pain-management-in-palliative-care-19

The seven Cs of primary palliative care

• 1. Communication
  
• 2. Coordination
• 3. Control of symptoms
• 4. Continuity of care
• 5. Continued learning
• 6. Carer support
• 7. Care of the dying pathway

https://onlinelibrary.wiley.com/

GOLDEN RULES

There are some key principles or ‘Golden Rules’ which underpin symptom management.

These include:

https://www.ruh.nhs.uk/For_Clinicians/departments_ruh/Palliative_Care/documents/palliative_care_handbook.pdf

These guidelines are about managing symptoms in the last days of life where the dying process has been identified. It assumes that the therapeutic aims are therefore:

https://www.eastberkshireccg.nhs.uk/wp-content/uploads/2018/03/berkshire-adult-palliative-care-guidelines.pdf

General practitioners (GPs) can use a proactive, systematic approach to anticipate and provide person-centred care to the end of life and a ‘good death’ by:

• initiating advance care planning early to document patient wishes and directives
• anticipating and assessing escalating palliative care needs early along the illness trajectory
• establishing clinical care goals and treatment decisions with the patient/medical decision maker
• reviewing clinical care plans frequently to address symptoms and physical, psychosocial and spiritual/existential issues
• coordinating and participating in the provision of team-based end-of-life care.

https://bit.ly/2Wx8TWq

Resuscitation Planning Policy Framework and toolkit
Policy Directive – Resuscitation Planning- 7 Step Pathway - outlines the requirements for SA Health employees to provide a standardised, patient-centred, best practice approach to planning for resuscitation and other care for an adult patient who is at end-of-life.
https://bit.ly/3dMXMOM

Clinical Use:  Although there is no known published data assessing the effectiveness of utilizing the illness trajectories as a clinical teaching tool, describing or even diagramming these illness trajectories with patients and families may be a concise communication technique to set expectations and offer guidance regarding the anticipated impact of chronic illness on daily life. Clinicians should be aware of the significant variability in the medical literature regarding the validity of these illness trajectories as well as the limitations in the way functional decline is measured between studies. Therefore, it is vital that illness trajectories be reevaluated as the condition evolves. In particular, certain patterns such as an abrupt functional decline or frequent hospitalizations may indicate the need to readdress goals of care.
https://www.mypcnow.org/fast-fact/illness-trajectories-description-and-clinical-use/

Supportive measures for minimizing suffering due to the disease or the therapy should be implemented according to the patient needs.
Supportive measures may include:

• – Relief of respiratory symptoms: oxygen should be used to alleviate shortness of breath; corticosteroids (prednisolone) are beneficial in severe respiratory insufficiency; codeine helps control cough.
• – Identification, assessment and treatment of pain: according to the standard recommendations (non opioids/mild opioids/strong opioids adapted to the level of pain).
• – All necessary ancillary medications needed should be used.
• – Patients with poor nutritional status should receive nutritional support.
• – In debilitated patients, important measures for making patients comfortable and preventing complications must be taken. Regular scheduled movement of the bedridden patients prevents bedsores. Bathing and oral care assistance keeps patients clean and comfortable, while preventing skin infections.
• – Disorders such as anxiety or depression due to prolonged sickness, separation from family, difficult living conditions, etc. should be addressed when present. The patient as well as the family may need support.
• – Potential social problems should also be addressed. When necessary, hospice-like care should be offered to families who want to keep the patient at home. Inpatient end-of-life care should be available to those for whom home care is not available.

Note: the above palliative/supportive measures should be implemented to all DR-TB patients if indicated whether or not they are failing treatment. Some measures may even need to be continued after a patient’s TB has cured, but the patient still remains with significant respiratory damage. 

https://medicalguidelines.msf.org/

• Most nurses learn about the term “illness trajectory” at some point during their nursing program. In loose terms, trajectory means “course,” and therefore illness trajectory means “course of illness.” By understanding which type of illness trajectory a patient has, it will help to provide answers for two important and common questions many patients have: “How long do I have?” and “What will happen?” (Murray, Kendall, Boyd, & Sheikh, 2005).
• Although Glaser & Strauss were the first to identify trajectories of dying, much work has been done since their initial description. These trajectories can also be referred to as illness trajectories.

https://courses.lumenlearning.com/suny-nursing-care-at-the-end-of-life/chapter/types-and-variability-within-illness-trajectories/

Using clinical profiles, Lunney et al. (2002) identified four groups representing EOL trajectories differing in duration and shape (Figure 1): sudden death, terminal illness, organ failure, and frailty.
https://academic.oup.com/psychsocgerontology/article/73/4/564/3938843

Care needs for different disease trajectories

Predictable trajectory—for example, for patients with cancer:

• ☛ Family support
• ☛ Symptom control
• ☛ Continuity of relationship
• ☛ Life closure
• ☛ Adaptability to rapid changes

Erratic trajectory—for example, for patients with organ system failure, heart failure, COPD, renal failure:

• ☛ Preplanning for urgent situations
• ☛ Life closure
• ☛ Prevention of exacerbations
• ☛ Decision making about benefits of low yield treatments
• ☛ Support at home
• ☛ Prepare family for “sudden death”

Long term gradual decline—for example, for patients with dementia and frailty:

• ☛ Endurance
• ☛ Long term home care service and supervision
• ☛ Helping carer to find meaning
• ☛ Avoiding unnecessary lingering
• ☛ Keeping skin intact
• ☛ Finding moments of joy and meaning for the patient

https://www.goldstandardsframework.org.uk/cd-content/uploads/files/Library%2C%20Tools%20%26%20resources/ABC%20Palliative%20Care.pdf

Anticipation of death opens the door for discussions of the expected nature of terminal decline and end-of-life preferences. The phase of Building a New Normal is prolonged as caregivers accept responsibility for comforting care through periods of marked functional decline.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3756496/

Although there is no known published data assessing the effectiveness of utilizing the illness trajectories as a clinical teaching tool, describing or even diagramming these illness trajectories with patients and families may be a concise communication technique to set expectations and offer guidance regarding the anticipated impact of chronic illness on daily life.

Organ failure: A more erratic trajectory with punctuated periods of decline likely correlating with acute exacerbations. Each exacerbation may result in death but is often survived with gradual deterioration in health and functional status. Timing of death is less certain than in cancer. Perhaps as a result, patients with congestive heart failure (CHF) and chronic obstructive pulmonary disorder are more likely to die in the hospital and less likely to receive hospice services nor understand the likely progression of their illness. https://www.mypcnow.org/fast-fact/illness-trajectories-description-and-clinical-use/

End-of-life care must also serve those who become increasingly frail, even without a life-threatening illness
Trajectories of functional decline at the end of life are quite variable. Differentiating among expected trajectories and related needs would help shape tailored strategies and better programs of care prior to death.
https://jamanetwork.com/journals/jama/fullarticle/196538

Consider a Palliative Care Consultation for Your Patient If:

• The care team, patient or family needs help with complex decision-making and determination of goals of care. Goals of care are derived when a medical professional has an open and guided discussion of:

• Uncertainty of prognosis
• Uncertainty of appropriateness of therapy options
• Uncertainty of end-of-life status and/or hospice appropriateness
• Divergent views over care exist. Here are some scenarios:

• The patient and/or family request care that team feels is ineffective and probably have unsuccessful outcomes.
• There are conflicts over DNR orders.
• There’s recognition of limited therapeutic impact of artificial nutrition and hydration in a cognitively impaired, seriously ill or dying patient.
• Family distress is resulting in possible impaired surrogate decision-making.

•  There’s a presence of threshold situations that possibly predict of further decline:

• New diagnosis of life-limiting illness
• Declining function with decreased ability to complete activities of daily living
• Unrelenting, unexplained weight loss
• Hospital admission from long-term care facility

• These conditions are present:

• Metastatic cancer with failure of multiple regimens of treatment
• Neurologic complications of cancer
• Brain metastases
• Spinal cord compression
• Carcinomatous meningitis
• Advanced lung disease with frequent exacerbations
• Advanced cardiac disease requiring consideration of LVAD or IV pressors
• Advanced renal disease with deterioration despite dialysis
• Neurodegenerative disease considering feeding tubes or ventilator support
• Anoxic encephalopathy
• Stroke with resultant function decreased by 50 percent, considered life-limiting
• Catastrophic multiple trauma
• Continued use of a ventilator

Source:
https://www.vitas.com/

A life-limiting illness is an illness that can’t be cured and that you’re likely to die from. You might hear this type of illness called ‘life-threatening’ or ‘terminal’. People might also use the terms ‘progressive’ (gets worse over time) or ‘advanced’ (is at a serious stage) to describe these illnesses. Examples of life-limiting illnesses include advanced cancer, motor neuron disease (MND) and dementia.
https://www.mariecurie.org.uk/help/support/diagnosed/recent-diagnosis/palliative-care-end-of-life-care

Late-stage care is also a time for saying goodbye to your loved one, to resolve any differences, forgive any grudges, and to express your love.
https://www.helpguide.org/articles/end-of-life/late-stage-and-end-of-life-care.htm

End of life care should help you to live as well as possible until you die and to die with dignity. The people providing your care should ask you about your wishes and preferences, and take these into account as they work with you to plan your care. They should also support your family, carers or other people who are important to you.
https://www.nhs.uk/conditions/end-of-life-care/what-it-involves-and-when-it-starts/

Grief can affect us not only emotionally but also physically, mentally, and even spiritually.
https://www.verywellmind.com/physical-symptoms-of-grief-4065135

Visual or auditory hallucinations are often part of the dying experience. The appearance of family members or loved ones who have died is common. These visions are considered normal. The dying may turn their focus to “another world” and talk to people or see things that others do not see. This can be unsettling, and loved ones may not know how to respond.
https://kokuamau.org/the-last-stages-of-life/

Many people are afraid of dying. Talking about it, thinking about it, or planning for their own deaths causes them discomfort. This fear may cause them to put off financial planning, preparing a will and testament, or requesting help from a hospice organization.
https://en.wikipedia.org/wiki/Death

Bereavement refers to outward expressions of grief. Mourning and funeral rites are expressions of loss that reflect personal and cultural beliefs about the meaning of death and the afterlife. When asked what type of funeral they would like to have, students responded in a variety of ways; each expressing both their personal beliefs and values and those of their culture.
https://courses.lumenlearning.com/wmopen-lifespandevelopment/chapter/emotions-related-to-death/

Dying can be a positive and rewarding experience; it can be a time of personal freedom and growth. But dying well begins with death acceptance. Furthermore, dying well involves hard work, because dying is more than a physical process.
https://www.meaning.ca/archives/archive/art_death-acceptance_P_Wong.htm

Terminal restlessness is characterized by the sudden appearance of incongruent behaviors rather than the anger, depression, or other emotions commonly experienced during the stages of dying.
https://www.verywellhealth.com/terminal-restlessness-1132271

When an individual is experiencing the symptoms of terminal restlessness, it is important to determine if it is being caused by something that can be treated to alleviate their distress.
https://www.crossroadshospice.com/hospice-palliative-care-blog/2018/january/31/what-is-terminal-restlessness/

Terminal agitation or restlessness can be defined as agitated delirium with cognitive impairment.
https://www.pharmaceutical-journal.com/cpd-and-learning/learning-article/dealing-with-the-dying-patient-treatment-of-terminal-restlessness-and-agitation/11119466.article?firstPass=false

Symptoms and signs of terminal agitation can include:

• 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.

These changes can be very distressing for the patient and their carers, family or friends.
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/

SPIKES Protocol for Delivering Bad News
1. Setting

1. ☛ Arrange for a private room or area. Have tissues available. Limit interruptions and silence electronics. Allow the patient to dress (if after examination). Maintain eye contact (defer charting). Include family or friends as patient desires.
2. Example phrases: "Before we review the results, is there anyone else you would like to be here?” “Would it be okay if I sat on the edge of your bed?”

2. Perception

• ☛ Use open-ended questions to determine the patient's understanding. Correct misinformation and misunderstandings. Identify wishful thinking, unrealistic expectations, and denial.
• Example phrases: "When you felt the lump in your breast, what was your first thought?” “What is your understanding of your test results thus far?”

3. Invitation

• ☛ Determine how much information and detail a patient desires. Ask permission to give results so that the patient can control the conversation. If the patient declines, offer to meet him or her again in the future when he or she is ready (or when family is available)
• Example phrases: "Would it be okay if I give you those test results now?” “Are you someone who likes to know all of the details, or would you prefer that I focus on the most important result?”

4. Knowledge

• ☛ Briefly summarize events leading up to this point. Provide a warning statement to help lessen the shock and facilitate understanding, although some studies suggest that not all patients prefer to receive a warning. Use nonmedical terms and avoid jargon. Stop often to confirm understanding.
• Example phrases: "Before I get to the results, I'd like to summarize so that we are all on the same page.” “Unfortunately, the test results are worse than we initially hoped.” “I know this is a lot of information; what questions do you have so far?”

5. Emotions

• ☛ Stop and address emotions as they arise. Use empathic statements to recognize the patient's emotion. Validate responses to help the patient realize his or her feelings are important. Ask exploratory questions to help understand when the emotions are not clear.
• Example phrases: "I can see this is not the news you were expecting.” “Yes, I can understand why you felt that way.” “Could you tell me more about what concerns you?”

6. Strategy and summary

• ☛ Summarize the news to facilitate understanding. Set a plan for follow-up (referrals, further tests, treatment options). Offer a means of contact if additional questions arise. Avoid saying, “There is nothing more we can do for you.” Even if the prognosis is poor, determine and support the patient's goals (e.g., symptom control, social support).
• Example phrases: "I know this is all very frightening news, and I'm sure you will think of many more questions. When you do, write them down and we can review them when we meet again.” “Even though we cannot cure your cancer, we can provide medications to control your pain and lessen your discomfort.”

Baile WF, Buckman R, Lenzi R, Glober G, Beale EA, Kudelka AP. SPIKES-A six-step protocol for delivering bad news: application to the patient with cancer. Oncologist. 2000;5(4):302–311.
https://www.aafp.org/afp/2018/0715/p99.pdf

Determining a primary hospice diagnosis can be challenging when a patient has some, but not all, of the clinical indicators of a specific disease or condition.
The following clinical signs often support hospice eligibility in combination with another primary diagnosis.
https://3n2051r71io3gt0mz1ykwju9-wpengine.netdna-ssl.com/wp-content/uploads/2016/10/Eligibility-Guide-by-Diagnosis.pdf

 

Dihadirkannya Pelayanan Paliatif di Rumahsakit adalah untuk melengkapi kebutuhan pasien paliatif mendapatkan pelayanan yang lebih lengkap sesuai dengan kebutuhan pasien tersebut yang semakin kompleks (Complex Needs) yang mencakup aspek Physical symptoms, Psychological , Social, Spiritual, dan Ethical.

 

Untuk kelima aspek tersebut dibutuhkan kerjasama multidispliner antara petugas kesehatan, pasien, keluarga dan perumatnya (caregiver) di dalam pelayanannya yang mengikuti laju progresifitas penyakit dan kondisi pasien paliatif.

 

 

The corticosteroid of choice within palliative care is Dexamethasone but Prednisolone is used at times. Below is a table of approximate anti-inflammatory equivalencies of several corticosteroids.

 

Dexamethasone has several advantages for patients with malignancy
• Lower sodium retention potency and hence reduced likelihood of fluid retention
• Ability to administer larger dose with small number of tablets.
• Tablets dispersed in small volumes of water.
• Available as subcutaneous injection.

 

SIDE EFFECTS
• Doses >4mg od are likely to lead to significant side effects after several weeks.
• Doses <4mg od are often tolerated in patients with a prognosis of months.

 

https://web.archive.org/web/20200819065359/https://www.palliativedrugs.com/download/08_0405_SPAG%20steroids.pdf

 

 

Pharmacotherapy is only one component of end-of-life care. Quality palliative care is delivered by a team of caregivers and focuses on careful individualization of holistic care based on patient and family goals. The evidence base supporting interventions at the end of life is limited, but growing.
https://web.archive.org/web/20200823124032/https://www.aafp.org/afp/2009/0615/afp20090615p1059.pdf

 

 

Okay kan, Bro!