"Mau atau nggak mau,
kita semua menuju ke arah kematian.
Jadi, mestinya kita semua membicarakannya,
membuat perencanaan dan kesepakatan.
Ya, karena mumpung masih ada waktu
(di saat kita masih hidup ini),
dan masih waras."
PRINCIPLES OF A GOOD DEATH:
- ☛ The ability to anticipate death and manage expectations
- ☛ Access to any necessary information resources and support, both spiritual and emotional
- ☛ Control over the situation, including pain relief, privacy, location of death and individuals present, combined with confidence that any predetermined instructions will be followed
- ☛ Maintenance of a sense of dignity
- ☛ Avoidance of needless prolonging of life, balanced with adequate time to say goodbye
https://www1.racgp.org.au/ajgp/2018/november/home-based-palliative-care/
WHAT IS PALLIATIVE CARE?
- Palliative care is provided by a team of doctors, nurses, and other specialists who work with a patient’s other doctors to provide an extra layer of support.
- Palliative care is appropriate at any age and at any stage in a serious illness , and can be provided together with curative treatment.
Palliative Care is an approach
that improves the quality of life
of patients
and their families
facing the problems
associated with life-limiting illness,
through the prevention
and relief of suffering
by means of early identification,
assessment
and treatment of pain
and other problems,
physical,
psychosocial
and spiritual.
END OF LIFE
Patients are approaching the end of life
when they are likely to die
within the next 12 months.
This includes patients whose death is imminent
(expected within a few days or hours)
and those with
a) advanced,
progressive
and incurable conditions,
b) general frailty
and co-existing conditions
that mean they are expected
to die within 12 months;
c) existing conditions
if they are at risk of dying
from sudden acute crisis
in their condition;
d) life threatening acute conditions
caused by sudden catastrophic events.
- 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.
- Palliative care is person and family-centred care provided for a person with an active, progressive, advanced disease, who has little or no prospect of cure and who is expected to die, and for whom the primary treatment goal is to optimise the quality of life.
- Dying is a normal process with palliative care offering a support system to help people to live their life as fully and as comfortably as possible until death and to help families cope during this illness and in their bereavement.
- People are approaching the ‘end of life’ when they are likely to die within the next 12-months.
- Grief is the response to loss that can affect thoughts, behaviours, beliefs, feelings, physical health and relationships with others.
- Bereavement is the process of grieving and the period of mourning that is entered after someone has died.
LOSSES IN LIFE LIMITING ILLNESS
☛ Physical strength and wellbeing
☛ Independence
☛ Role
☛ Interpersonal relationships
☛ Sexual function
☛ Physical integrity
☛ Life expectancy
☛ Control
☛ Mental integrity
☛ Safety
INITIATION OF PALLIATIVE CARE
There is no definitive tool to predict when to initiate palliative care. The decision to initiate palliative care is made jointly by the provider, the patient and the patient’s caregiver(s). Factors that influence this decision may include cultural beliefs/barriers, and religious/spiritual beliefs. The attached tools may be helpful as a way to assess your patient’s physical and emotional status. This in turn may make the discussion of care planning easier to initiate.
↓↓↓↓↓
Palliative Care Looks Like:
- ☛ Vigorous Treatment of pain and other symptoms
- ☛ Relief from worry, anxiety and depression
- ☛ Close Communication about care
- ☛ Coordination of care and transitions
- ☛ Support for family caregivers
- ☛ A sense of Safety in the health care system
Providing care that patients need and want!
↓↓↓↓↓
Recognising dying in a timely manner enables the person and their family/carer(s) to receive individualised care that aligns with their preferences.
Failure to recognise dying and clarification of the goals of treatment can lead to poor outcomes including:
- ☛ continuation of potentially burdensome medical treatment in the last days of life
- ☛ missed opportunities to understand what is important to the person and those close to them
- ☛ missed opportunities to provide holistic care that optimises the person’s autonomy and wellbeing.
Some evidence from one review highlighted some key barriers to an early integrated approach to palliative care among cancer and non-cancer patients in a hospital setting.
Among patients with cancer, these were:
• poor staff communication with patients and their families about their prognosis
• not embedding palliative care into healthcare systems.
Among patients with chronic conditions such as chronic heart failure and chronic obstructive pulmonary disorder, key barriers included:
• difficulty in identifying a specific point at which the patient is identified for a palliative approach
• the unpredictable prognosis and illness trajectory
• perception of their disease as not life-threatening
• poor patient understanding of their disease prognosis
• poor communication skills among healthcare professionals
• lack of cooperation between different healthcare specialists.
The first US hospice program opened in 1974,
funded by a three-year grant from the National Cancer Institute.
Today, hospice’s expertise in management of the medical, psychosocial and spiritual aspects of terminal cancer is widely acknowledged.
↓ ↓ ↓ ↓But over the quarter century since its inception, hospice’s role has broadened. Today non-cancer diagnoses like congestive heart failure (CHF) and chronic obstructive pulmonary disease (COPD) account for an ever-larger proportion of hospice enrollments.
↓ ↓ ↓ ↓
Once the health care team has ascertained that the person is likely to be in the last days of life because reversible causes of their condition have been excluded the plan of care should focus on the most important and achievable aspects of care at this stage:
- ☛ Comfort - by identifying and alleviating symptoms and causes of discomfort and anxiety
- ☛ Reduction of burdens of medications that are no longer essential
- ☛ Avoidance of unwanted transfers, hospital admissions
- ☛ Avoidance of interventions and investigations that will not help the patient’s current or future condition
- ☛ Help to support relatives and others close to the patient, including informing them of what is happening and what to expect
- ☛ Ensuring that appropriate religious and other desired individual spiritual support is enabled
End-of-life Care
Within the palliative care philosophy, death is viewed as a normal process; thus, the aim of palliative care is to neither hasten nor postpone death.
End-of-life care (CHPCA, 2002):
- ☛ Encompasses care of the whole person, including his/her physical, psychological, social, spiritual and practical needs.
- ☛ Ensures that care is respectful of human dignity.
- ☛ Supports meaningful living as defined by the individual.
- ☛ Tailors care planning to meet the individual’s goals of care.
- ☛ Recognizes the individual with life-limiting disease and his/her family as the unit of care.
- ☛ Supports the family to cope with loss and grief during the illness and bereavement periods.
- ☛ Respects the individual’s personal, cultural and religious values, beliefs and practices in the provision of care.
- ☛ Values ethical principles of autonomy, beneficence, non-maleficence, justice, truthfulness and confidentiality.
- ☛ Recognizes the individual as autonomous, who has a right to end-of-life care and to make decisions regarding his/ her care to the degree he/she desires.
- ☛ Recognizes the importance of a collaborative interprofessional team approach to care, and also recognizes the efforts of non-health-care professionals (e.g. volunteers, faith leaders).
Palliative care requires a team approach
to ensure best patient and carer outcomes.
Most home-based palliative care teams are
led and proactively coordinated by the GP.
Team members vary and should be determined
by patient needs and local availability of professionals.
Members include clinicians such as
nurses, social workers, occupational therapists,
other allied health professionals and the local pharmacist.
With more complex patients,
specialist palliative care services may be
enlisted to complement the skills of the local team.
The carer’s role is worthy of mention.
Carers usually know the patient most intimately
and are motivated to help.
Carers are increasingly becoming embedded
into resource-stretched palliative care teams
to assume some responsibility for symptom management,
particularly the preparation and administration of
subcutaneous medications.
When appropriately educated,
they do this safely and with confidence.
https://www1.racgp.org.au/ajgp/2018/november/home-based-palliative-care/
BARRIERS TO ACCESSING PALLIATIVE CARE
• Prognostic uncertainty and hard to predict
disease trajectories.
• A failure or reluctance to identify
certain conditions (eg dementia)
as terminal by professionals.
• A lack of understanding of what palliative
care is, and what it can achieve for people
with conditions other than cancer, by
both professionals and people with a
terminal illness and their families.
• For some conditions, such as COPD, a
paucity of research which demonstrates
potential benefits of palliative care on
patient’s health outcomes (compared to
the amount of research on lung cancer,
for example).
• A lack of confidence from professionals in
delivering care appropriate for people
approaching the end of their life, for
example, thinking that initiating end of life
care discussions is someone else’s role or
concerns about the legal standing of
advance decisions.
• Under-developed links between condition
specialists and palliative care specialists.
Today’s consensus statement sets out principles of care that put the patient first, considers values and wishes and recognises the importance of training in palliative care.
POLST: Portable Medical Orders, or POLST for short.
POLST communicates your wishes as medical orders
A POLST form tells all health care providers during a medical emergency what you want:
“Take me to the hospital” or “I want to stay here”
“Yes, attempt CPR” or “No, don’t attempt CPR”
“These are the medical treatments I want”
“This is the care plan I want followed”
https://web.archive.org/web/20210114100815/https://polst.org/
Ooookay kan, Bro!
