"Kapan terakhir kali sampeyan menghubungi ibu, Mas?"
Sudden Death or Decline:
An abrupt change from normal physical function to either death or significant medical disability, often as a result of trauma or an acute cardiopulmonary/neurologic event. Many times there is little or no prior interaction with the health system nor a recognizable pattern of functional decline preceding the event.
Thus, intense displays of shock or anger are common from family members when clinicians break bad news.
Loved ones are at increased risk for depression and complicated grief as they adjust to the new medical reality after the event.
https://www.mypcnow.org/fast-fact/illness-trajectories-description-and-clinical-use/
https://www.mypcnow.org/fast-fact/illness-trajectories-description-and-clinical-use/
‘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:
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?
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/
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
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1071019/
- 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
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
Five Steps of Advance Care Planning
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.
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.
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
Don't take chances!
Review whenever there is a change in you health, personal life or living situation
- • advance care planning is not a one-time event
- • it is important to revisit your plan and make adjustments that reflect your values and wishes
- • as long as you are able to understand and communicate, you will be able to make your own health-care decisions
- • you can change your advance care plan at any time
Five Steps for Planning
Follow five key steps:
- 1. Think. Think about what matters to you.
- 2. Talk. Talk about your wishes with your family, friends, and medical providers.
- 3. Put it in writing. Document your choices and decisions.
- 4. Share. Share your documents with your family, friends, and medical providers.
- 5. Review. Review your advance care plan, including any documents you created at least once a year.
“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
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/
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’.https://epub.ub.uni-muenchen.de/43641/1/EAPC_White_Paper.pdf
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.
REDMAP FRAMEWORK
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:
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
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
There are no drug treatments available
for approximately 95 percent
of the nearly 7,000 identified rare diseases.
for approximately 95 percent
of the nearly 7,000 identified rare diseases.
There is, however,
a way to improve the quality of life
of children living
with serious and life-limiting illnesses:
pediatric palliative care.
This is provided by
an interdisciplinary team,
including
physicians,
nurses,
and social workers,
who work closely
with the family
and primary care providers.
Palliative care is often misunderstood.
People associate it with
end-of-life care,
hospice care,
or “giving up”
– especially when facing
a serious health challenge.
a way to improve the quality of life
of children living
with serious and life-limiting illnesses:
pediatric palliative care.
This is provided by
an interdisciplinary team,
including
physicians,
nurses,
and social workers,
who work closely
with the family
and primary care providers.
Palliative care is often misunderstood.
People associate it with
end-of-life care,
hospice care,
or “giving up”
– especially when facing
a serious health challenge.
https://web.archive.org/web/20210119152448/https://globalgenes.org/wp-content/uploads/2014/11/Toolkit_12_Web.pdf
Why palliative care is essential in the face of serious illness
"you're on a plane flying at 36,000 feet
you're sitting back you're reading a
book watching a movie sipping a drink
when suddenly the plane drops 10,000
feet and you look out and there's an
engine on fire you're in a panic and you
think I'm gonna die ...."
AREAS OF POTENTIAL DISTRESS
Four areas of potential distress that are amenable for therapeutic interventions:
- Pain and other physical symptoms,
- e.g. nausea, fatigue, vomiting, dyspnoea, constipation,
- Psychological factors,
- such as anxiety, depression, confusion, insomnia, as well as factors that might adversely influence these disorders,
- e.g. physical symptoms, feelings of hopelessness, lack of perceived support, strained relationships,
- Existential (or spiritual) issues,
- e.g. the view that life may be without meaning, death anxiety, disappointment, religious issues,
- Family and caregiver distress,
- resulting from the anticipated loss, from being witness to the patient’s distress, or from the burden of care.
https://link.springer.com/article/10.1007/s11019-019-09921-7
Oookay kan, Bro!
