Misinformation and lack of good published evidence about the benefits of palliative care in some situations means that some patient groups are denied an appropriate referral.
The rapid and unplanned growth of hospices and other palliative care services has led to several problems in the way that these services are perceived by both the public and professionals and therefore accessed.
These problems include:
* heterogeneity in what palliative care services in different localities offer (a form of 'postcode lottery');
* lack of understanding amongst professionals about whom to refer, and when;
* resistance by some professionals to share with or hand patients over to palliative care services, even when it would be in the patients' interest;
* reluctance by many patients and family carers to be referred for palliative care, because of misunderstandings of what it offers, or fear of its association with imminent dying;
* perception that palliative care is only for cancer patients; and
* missed opportunities resulting from patients having certain cultural backgrounds, or being in institutional care.
https://doi.org/10.1191/0269216304pm921oa
Figure: AZ’s health and kidney palliative care trajectory illustrate an example of primary KPC and specialty KPC delivery to address kidney palliative care needs in advanced kidney disease. Kidney palliative care needs are represented on the vertical axis; time is represented on the horizontal axis. The dashed lines divide major periods along AZ’s health trajectory, which are identified at the top of the figure. Kidney palliative care skills and outcomes corresponding to kidney palliative care needs are identified for each period in AZ’s health trajectory. KPC, kidney palliative care; RLS, restless legs syndrome.
https://pubmed.ncbi.nlm.nih.gov/30728167/
FIVE PHASES OF PALLIATIVE CARE
STABLE
• Adequately controls existing problems and symptoms
and
• Plans further interventions to maintain symptom control and quality of life
and
• Family & carer situation is relatively stable, and no new issues are apparent
Established plan of care is in place
UNSTABLE
• Existing problems rapidly increase in the severity
and/or
• New problem(s) develop that were not anticipated in the existing plan of care
and/or
• Family & carer circumstances change that suddenly impact on patient care
Urgent change in plan of care or emergency treatment is required
DETERIORATING
• Overall functional status is declining
and
• Gradual worsening of existing problems
and/or
• New, but anticipated, problems develop
and/or
• Family & carers experience gradual worsening distress which impacts patient care
Plan of care addresses anticipated need
Care plan needs periodic review, to address expected worsening symptoms and distress
TERMINAL
• Death is likely within days
Change in focus of plan of care to ensure physical, psychological and spiritual comfort care, with provision of anticipatory end of life medications
Care plan requires
BEREAVEMENT
• Patient has died
Planned provision of bereavement support to family & carers
https://web.archive.org/web/20210516070431/https://www.wnswphn.org.au/uploads/documents/ePAF/4%20-%20Five%20Phases%20of%20Palliative%20Care%20%28revised,%202012%29%20-%20v2%20June%202016.pdf
The 10 Cs of Care of the Dying
C1 Consider dying as a possibility
C2 Competence
C3 Compassion
C4 Capacity
C5 Communication
C6 Current needs
C7 Ceilings of treatment and intervention
C8 Care planning
C9 Care in the last stages of life
C10 Continuing care
C7 – Ceilings of treatment / intervention
• Some ceilings
– Transplant(!!)
– Dialysis; ventilation; cardiac devices(!)
– CPR
– Surgery
– Chemotherapy / Radiotherapy
– Antibiotics I/V
– Admission or transfer
– Nutritional support
– Hydration / S/C fluids
– Blood tests (arterial, venous, capillary)
– Antibiotics oral
– Routine positional change
- good symptom control
- good communication (with family and carers, as well as the dying person)
- holistic care (physical, psychological, social and spirirtual)
- individual care
Palliative care should also be differentiated from end-of-life care. While end-of-life care often focuses on the last months or years of the patient’s life when the illness is life-threatening, palliative care can be offered at any time from diagnosis to bereavement, as shown in the diagram below.
https://www.closingthegap.ca/guides/palliative-care-in-ontario-everything-you-need-to-know/
Not just for patients with cancer.
- The following criteria should be considered as criteria for initiating a palliative care referral:
- Ask yourself, "Would I be surprised if this patient died in the next year?" If the answer is "yes," then consider a palliative consultation.
- Patients with advancing dementia, end-stage renal failure, end-stage liver failure, congestive heart failure, advanced lung disease, advanced ALS/MS, have palliative needs
- Frequent emergency room visit for the same diagnosis
- Frequent hospital admissions for the same diagnosis in the last 30 days
- Prolonged hospital or ICU stay (7-14 days) without evidence of improvement Declining ability to complete activities of daily living
- Difficult to control physical or emotional symptoms
- Patient or family needs help making complex care decisions
- Physician needs support with difficult conversations about prognosis
Palliative Care Health Services Delivery Framework
http://www.centraleastlhin.on.ca/priorities/palliativeandendoflife/PalliativeDeliveryFramework.aspx
- Accurate assessment of need in the physical, psychological, social and spiritual domains is crucial if distressing symptoms are to be managed effectively
- Emphasis is on keeping the patient comfortable and not cure
- Symptoms are multidimensional, therefore management will be through a multi-professional team approach, so communication between teams is vital
- Involve the patient in decision making
- Work with the person and those close to them to ensure they understand the treatment
- Record keeping is vital as the treatment can be complex.
THE USE OF SUBCUTANEOUS HYDRATION IN PALLIATIVE CARE
Indications for use
- Dehydration contributing to poor renal clearance of opioids which are causing symptoms of toxicity.
- Dehydration due to drowsiness due to reversible causes (e.g. infection).
- Inability to swallow e.g. advanced head and neck tumour, unsuitable for gastrostomy or other artificial feeding tube.
- Symptoms due to dehydration that are not responding to other treatment (e.g. intractable nausea or vomiting, severe dry mouth or thirst).
- To meet fluid requirements in the short term when oral intake is inadequate and maintaining an intravenous line is difficult or inappropriate.
- Strong patient (or carer where the patient lacks capacity) informed preference for artificial hydration where there are no contraindications.
http://www.wmcares.org.uk/wp-content/uploads/Subcutaneous-hydration-in-palliative-care-v2.4-Final.pdf
Differentiating between a normal and appropriate reaction to serious illness (grief at time of diagnosis, periods of grief, worry and sadness thereafter) versus a treatable major depression is challenging but feasible with routine screening approaches.
https://www.capc.org/training/symptom-management/depression/launch/
Primary Care Electronic Frailty Index (eFI)
https://bit.ly/eFIPC
Withdrawal of Life Sustaining Treatments (WLST)
https://bit.ly/WLSTPC
Symptoms of Disease Process-Since Palliative Care Emphasizes the Quality of Life
https://bit.ly/SymptomsPC
Types and Variability within Illness Trajectories
Advance Care Planning is a vital component of end of life care – if we don’t know what our patients want we are unlikely to be able to meet their wishes.
https://www.somersetccg.nhs.uk/about-us/how-we-do-things/palliative-care/
Five new Priorities for Care
The new Priorities for Care mean that:https://www.cqc.org.uk/news/stories/priorities-care-part-new-approach-care-dying-people
- 1. The possibility that a person may die within the coming days and hours is recognised and communicated clearly, decisions about care are made in accordance with the person’s needs and wishes, and these are reviewed and revised regularly by doctors and nurses.
- 2. Sensitive communication takes place between staff and the person who is dying and those important to them.
- 3. The dying person, and those identified as important to them, are involved in decisions about treatment and care.
- 4. The people important to the dying person are listened to and their needs are respected.
- 5. Care is tailored to the individual and delivered with compassion – with an individual care plan in place.
Comfort Cares “At the end of life each story is different”
https://sites.google.com/view/comfortcares/home
Six key themes that the Ombudsman service regularly sees in its end of life care casework. These are:
- 1. Not recognising that people are dying or responding to their needs
- 2. Poor symptom control
- 3. Poor communication
- 4. Inadequate out-of-hours services
- 5. Poor care planning
- 6. Delays in diagnosis and referrals for treatment
Spiritual Assessment Examples
Existential
Lack of meaning / questions meaning about one’s own existence / Concern about afterlife / Questions the meaning of suffering / Seeks spiritual assistance
“My life is meaningless”
“I feel useless”
Abandonment God or others
Lack of love, loneliness / Not being remembered / No Sense of Relatedness
“God has abandoned me”
“No one comes by anymore”
Anger at God or others
Displaces anger toward religious representatives / Inability to Forgive
“Why would God take my child…its not fair”
Concerns about relationship with deity
Closeness to God, deepening relationship
“I want to have a deeper relationship with God”
Conflicted or challenged belief systems
Verbalizes inner conflicts or questions about beliefs or faith Conflicts between religious beliefs and recommended treatments / Questions moral or ethical implications of therapeutic regimen / Express concern with life/death and/or belief system
“I am not sure if God is with me anymore”
Despair / Hopelessness
Hopelessness about future health, life
Despair as absolute hopelessness, no hope for value in life
“Life is being cut short”
“There is nothing left for me to live for”
Grief/loss
Grief is the feeling and process associated with a loss of person, health, etc
“I miss my loved one so much”
“I wish I could run again”
Guilt/shame
Guilt is feeling that the person has done something wrong or evil; shame is a feeling that the person is bad or evil
“I do not deserve to die pain-free”
Reconciliation
Need for forgiveness and/or reconciliation of self or others
“I need to be forgiven for what I did“
“I would like my wife to forgive me“
Isolation
From religious community or other
“Since moving to the assisted living I am not able to go to my church anymore”
Religious specific
Ritual needs / Unable to practice in usual religious practices
“I just can’t pray anymore”
Religious / Spiritual Struggle
Loss of faith and/or meaning / Religious or spiritual beliefs and/or community not helping with coping
“What if all that I believe is not true”
https://spiritualdiversity.ku.edu/sites/spiritualitydiversity.drupal.ku.edu/files/docs/Aging/EducationTraining/Improving%20the%20quality%20of%20sp%20care%20as%20a%20dimension%20of%20palliative.pdf
Nutrition in Palliative and End-of-Life Care
https://bit.ly/NutritioninPalliativeandEndofLifeCare
- fatigue,
- anorexia,
- cachexia,
- dry mouth,
- cough,
- hyperhidrosis,
- pruritus.
Materi Presentasi
Pelatihan Perawatan Paliatif dan Akhir Hayat
di STIKES Telogorejo Semarang
21 - 23 Desember 2020
Topik: Palliative Care and End-of-Life Care
https://drive.google.com/file/d/1pmFae9RvG5M07uicX5PcrAXd8q25hWWH/view?usp=sharing
Patients with compensated cirrhosis
have a median survival of over 12 years;
however, each year, 5%–7% progress to
decompensated cirrhosis with a median
survival of just 2 years.
The most frequently reported symptoms
in patients with end-stage liver disease (ESLD) were
pain, breathlessness, muscle cramps,
sleep disturbance, depression, anxiety
and erectile dysfunction;
however, these issues are
seldom addressed by hepatologists.
https://web.archive.org/web/20210530130441/https://fg.bmj.com/content/flgastro/11/3/218.full.pdf
BARRIERS to PALLIATIVE CARE
do not receive palliative care
and some are referred too late
in the course of their disease
to benefit from treatment.
The reasons for this
may relate to the physician,
the patient,
the family,
or to societal factors.
https://web.archive.org/web/20210122105526/https://hospicecare.com/uploads/2013/9/The%20IAHPC%20Manual%20of%20Palliative%20Care%203e.pdf
EVIDENCE
Early palliative care for patients with advanced cancer
• Improves quality of life
• Increases satisfaction with care
• Improves mood
• May increase survival
Okay kan, Bro!
IKA SYAMSUL HUDA MZ
