Manakala hati menggeliat mengusik renungan
Mengulang kenangan saat cinta menemui cinta
Suara sang malam dan siang seakan berlagu
Dapat aku dengar rindumu memanggil namaku
Saat aku tak lagi di sisimu
Ku tunggu kau di keabadian
Aku tak pernah pergi, selalu ada di hatimu
Kau tak pernah jauh, selalu ada di dalam hatiku
Sukmaku berteriak, menegaskan ku cinta padamu
Terima kasih pada maha cinta menyatukan kita
Saat aku tak lagi di sisimu
Ku tunggu kau di keabadian
Cinta kita melukiskan sejarah
Menggelarkan cerita penuh suka cita
Sehingga siapa pun insan Tuhan
Pasti tahu cinta kita sejati
Saat aku tak lagi di sisimu
Ku tunggu kau di keabadian
Cinta kita melukiskan sejarah
Menggelarkan cerita penuh suka cita
Sehingga siapa pun insan Tuhan
Pasti tahu cinta kita sejati
Lembah yang berwarna
Membentuk melekuk memeluk kita
Dua jiwa yang melebur jadi satu
Dalam kesunyian cinta
Cinta kita melukiskan sejarah
Menggelarkan cerita penuh suka cita
Sehingga siapa pun insan Tuhan
Pasti tahu cinta kita sejati
Prognostication in Serious Chronic Illness
Some very nonspecific changes suggest progression of illness, are usually associated with an increase in emergency department visits and frequency of hospitalizations, and are typically taken to mean a prognosis measured in months. This includes, for example, a decline in performance status, as measured using the Karnofsky Performance Status (KPS), the Palliative Performance Scale (PPS), or the Eastern Cooperative Oncology Group (ECOG) scale. These scales can be used equivalently. The Karnofsky scale is the oldest and the most commonly used, and the PPS scale is preferred by palliative care specialists. A KPS or PPS score of <70% may indicate hospice eligibility.
https://web.archive.org/web/20200818014123/https://www.mjhspalliativeinstitute.org/wp-content/uploads/2017/08/Prognostication-PALLIATIVE-CARE-REVIEW.pdf
- → it should never be withheld until such time as all modalities of treatment of the underlying disease have been exhausted
- → it is active therapy that is complementary to active treatment of the underlying disease
- → It should be integrated in a seamless manner with other aspects of care
- → a holistic approach to care, encompassing all aspects of a patient’s suffering and which is a prerequisite for successful palliative care, is often lacking in modern disease-orientated medicine.
Dame Cicely Saunders’ concept of “Total Pain and Suffering” 4 domains:
- 1) Physical Pain – easily treated by traditional medical model
- 2) Psychological Pain – often manifest as depression, anxiety, or agitation
- 3) Social Pain – results from the change in relationships and role that occur with progressive disease
- 4) Existential or Spiritual Pain – deals with larger questions of the meaning of patient’s life, their legacy, and the “why” of dying
REMEMBER THE FIVE PRIORITIES FOR THE CARE OF DYING PATIENTS:
PRIORITY 1: RECOGNISE
State the names and positions
of multiprofessional team
involved in assessment of patient
and recognition of dying phase,
(including senior doctor and nurse),
the diagnosis and
condition now
thought to be irreversible
and contributing to dying phase.
PRIORITY 2: COMMUNICATE
Open,
honest
and sensistive communication
is key.
Involve the patient
as much as they want
in decisions
about their care,
explore their concerns,
wishes
and preferences;
document their understanding
about information communicated.
Apply principles of MCA
if patient lacks capacity
for decision making.
Confirm any Advance Decision documents or LPA.
Document what has been explained
to the patient
(and those important to them)
about the recognition of dying.
If not explained you must say why.
PRIORITY 3: INVOLVE
Ensure the dying person
and those important to them know
which senior clinicians are leading
their care
and document this.
Involve the dying person
and people who matter to them
(as much as the patient wishes)
in decisions
about treatment
and care,
plus day to day decisions
about food,
drink
and personal care.
Listen to their views
and concerns
and document questions answered.
Apply principles of MCA
if patient lacks capacity
for decision making.
PRIORITY 4: SUPPORT
Explore
and document the holistic support needs
(including spiritual,
religious,
cultural,
practical)
of people who matter most
to the dying person.
Detail what you have explained
about what to expect
in dying phase
and further written information
you have provided.
Provide contact details
of clinical team
and ward.
PRIORITY 5: PLAN AND DELIVER AN INDIVIDUALISED PLAN OF CARE
Remember to define
in the dying person’s
individualised plan of care:
Goals of care,
changes to any clinical interventions
or treatments,
management of pain
and other physical symptoms,
management of psychological/emotional,
spiritual,
cultural,
religious,
practical
and other needs,
plan for hydration
and nutrition,
place of care
and review plan.
Do you need to refer
to the Specialist Palliative Care Team?
THE FIVE PRIORITIES FOR CARE OF THE DYING PERSON
https://pharmacopallcare.blogspot.com/2020/09/the-five-priorities-for-care-of-dying.html
These include:
- Assess and diagnose the cause of symptoms, before planning symptom management
- Treat potentially reversible causes, where appropriate
- Always consider non-drug approaches as they can be as important as the use of drugs
- Management plan is influenced by prognosis and patient choice and depends on the therapeutic goal
- Plan regular REVIEW and reassessment for all symptoms
- Set therapeutic goals for drugs prescribed e.g. use opioids as analgesics, not for sedation
- All drugs need a review date; the goal is to use the minimum effective dose
- Adopt a team approach
- Ask for specialist advice in difficult situations*
Principles of good pain control
- ☛ Assess the patient and explore their concerns and expectations.
- ☛ Help patients and their carers to understand symptoms
- ☛ Treat the cause of the pain where possible
- ☛ Use the analgesic ladder at the appropriate step
- ☛ Prescribe analgesia on a regular basis
- ☛ Prescribe appropriate analgesic for breakthrough pain
- ☛ Explain the management plan to patient and carer
- ☛ Review analgesic needs frequently
The majority of people nearing death do not eat or drink, nor do they feel hunger. Our bodies no longer need or use nutrients as we near the end of life. Food and drinks do not taste good, and are often difficult to swallow or digest.
It can be hard for caregivers when their loved one does not want to eat or drink, but it’s a normal part of the dying process. Because of decreased input, and other physiological reasons, there will likely be a decrease in stool and urine output as well.
https://hospice-ncal.kaiserpermanente.org/wp-content/uploads/2017/03/KP-NCAL-Hospice_Days-and-Hours-Before-Death.pdf
PALLIATIVE CARE PHASES
Palliative Care Phases:
1 Stable
2 Unstable
3 Deteriorating
4 Terminal Care
5 Bereaved
(1) Stable Phase
All clients not classified as unstable, deteriorating, or terminal.
The person’s symptoms are adequately controlled by established management. Further interventions to maintain symptom control and quality of life have been planned.
The situation of the family/carers is relatively stable and no new issues are apparent. Any needs are met by the established plan of care.
(2) Unstable Phase
The person experiences the development of a new problem or a rapid increase in the severity of existing problems, either of which requires an urgent change in management or emergency treatment
The family/carers experience a sudden change in their situation requiring urgent intervention by members of the multi-disciplinary team.
(3) Deteriorating Phase
The person experiences a gradual worsening of existing symptoms or the development of new but expected problems. These require the application of specific plans of care and regular review but not urgent or emergency treatment.
The family/carers experience gradually worsening distress and other difficulties, including social and practical difficulties, as a result of the illness of the person. This requires a planned support program and counselling as necessary.
(4) Terminal Care Phase
Death is likely in a matter of days and no acute intervention is planned or required. The typical features of a person in this phase may include the following:
• Profoundly weak
• Essentially bed bound
• Drowsy for extended periods
• Disoriented for time and has a severely limited attention span
• Increasingly disinterested in food and drink
• Finding it difficult to swallow medication
• This requires the use of frequent, usually daily, interventions aimed at physical, emotional and spiritual issues.
• The family/carers recognise that death is imminent and care is focussed on emotional and spiritual issues as a prelude to bereavement
(5) Bereaved Phase
Death of the patient has occurred and the carers are grieving. A planned bereavement support program is available including counselling as necessary.
https://apps.hnehealth.nsw.gov.au/hapcn/assets/resource/PC%20Clinical%20Assessment%20Tools.pdf
Timing of palliative care:
When to call for a palliative care consult
Palliative care, unlike hospice, can be utilized concurrently with disease-modifying or curative therapies. Some of the benefits of palliative care include improved quality of life, less end-of-life treatment, and decreased medical costs. Furthermore, palliative care can help guide treatment decisions to be in line with patients’ physical, psychological, and spiritual needs. On the basis of these benefits, we advocate for palliative care involvement early in the course of advanced malignancy and other terminal diagnoses.
https://pubmed.ncbi.nlm.nih.gov/31102469/
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https://drive.google.com/file/d/1_L0F3m01RRKnNw4qjv8s_WG0YeUPBlVj/view?usp=sharing
