SEDERHANAKANLAH, Kamu takkan Menyesal Karenanya!
COMMUNICATION
Goals of Communication at the End of Life
• Convey respect and understanding for the patients as a person first, patient second
• Convey information about illness, likely course and treatment options
• Communicate empathy and support
• Convey appropriate hope
• Develop a treatment plan in context of patient’s goal, values and notions of quality of life
• Arrange follow up meetings and reassure about ongoing care and support
Healthcare professionals’ fears about
communicating with palliative care patients
☛ Fear of being blamed (blaming the messenger).
☛ Fear of the untaught
☛ Fear of eliciting a reaction (tears, anger).
☛ Fear of saying ‘I don’t know’.
☛ Fear of expressing emotion (crying).
☛ Fear of medical hierarchy.
☛ Fears and anxieties about their own death.
SPIRITUAL SCREENS, HISTORIES AND ASSESSMENTS
FACT (LaRocca-Pitts)
F Faith (or Beliefs):
What is your Faith or belief?
Do you consider yourself a person of Faith or a spiritual person?
What things do you believe that give your life meaning and purpose?
A Active (or Available, Accessible, Applicable):
Are you currently Active in your faith community?
Are you part of a religious or spiritual community?
Is support for your faith Available to you?
Do you have Access to what you need to Apply your faith (or your beliefs)?
Is there a person or a group whose presence and support you value at a time like this?
C Coping (or Comfort); Conflicts (or Concerns):
How are you Coping with your medical situation?
Is your faith (your beliefs) helping you Cope?
How is your faith (your beliefs) providing Comfort in light of your diagnosis?
Do any of your religious beliefs or spiritual practices Conflict with medical treatment?
Are there any particular Concerns you have for us as your medical team?
T Treatment plan:
If patients are coping well, then either support and encourage or reassess at a later date as the situation changes. If patients are coping poorly, then
1. Depending on relationship and similarity in faith/beliefs, provide direct intervention, e.g., spiritual counseling, prayer, Sacred Scripture.
2. Encourage patients to address these concerns with their individual faith leaders.
3. Make a referral to the hospital chaplain for further assessment.
SUBCUTANEOUS MEDICATIONS FOR PALLIATIVE CARE
https://pharmacopallcare.blogspot.com/2020/09/subcutaneous-medications-for-palliative.html
- Patients’ attitudes to treatment and interventions may shift as prognosis shortens
- Personal priorities and preferred place of care may change
- Prognosis may affect the sustainability of care arrangements in the community.
https://diigo.com/0huehg
You raise me up
Josh Groban - Closer
When I am down and, oh my soul, so weary
When troubles come and my heart burdened be
Then, I am still and wait here in the silence
Until you come and sit awhile with me.
You raise me up, so I can stand on mountains
You raise me up, to walk on stormy seas
I am strong, when I am on your shoulders
You raise me up: To more than I can be.
You raise me up, so I can stand on mountains
You raise me up, to walk on stormy seas
I am strong, when I am on your shoulders
You raise me up: To more than I can be.
There is no life - no life without its hunger
Each restless heart beats so imperfectly
But when you come and I am filled with wonder
Sometimes, I think I glimpse eternity.
You raise me up, so I can stand on mountains
You raise me up, to walk on stormy seas
I am strong, when I am on your shoulders
You raise me up: To more than I can be.
You raise me up, so I can stand on mountains
You raise me up, to walk on stormy seas
I am strong, when I am on your shoulders
You raise me up: To more than I can be.
Advance Care Planning helps you to consider and plan for future medical care.
https://planningaheadtools.com.au/advance-care-planning
- organizational
- poor administration
- lack of goal definition
- inadequate funding for infrastructure, personnel, medications
- lack of resources, poor allocation
- failure to recognize clinical team’s achievements
- no opportunity to develop new skills
- team
- poor leadership
- poor definition of goals
- unreasonable clinical workloads
- reimbursement issues
- poor communication
- role ambiguity: interdisciplinary conflict
- patients
- difficult patients
- difficult dysfunctional families
- emotional attachment to patients
- unrealistic goals
- attempting to solve all problems
- attempting to deal with long-standing family problems
- personal stresses
- personal
- marital
- family
Five simple steps to completing an advance directive
- 1. Select a person who can speak for you if you are too ill or unable to communicate clearly (health care agent).
- 2. Think about what is most important for your quality of life should you become seriously ill or injured with a life-threatening condition.
- 3. Write down your wishes in an advance directive form. Your health care directive indicates care you wish to have or avoid such as a feeding tube or life sustaining measures.* Durable power of attorney for health care names your health care agent.
- 4. Have document notarized or your signature witnessed by two people who are not related to you or might benefit financially from you.
- 5. Share copies of your advance directives with your family, caregivers and health care team so they can support you and your decisions when needed.
“Planning is bringing the future into the present so you can do something about it right now.” – Alan Lakein
Advance Care Planning - Key Points
- - You should start Advance Care Planning today to retain control over your medical care in case there is a time when you are unable to make your own decisions
- - Advance Care Planning tools include:
- Advance directives (living will and healthcare power of attorney)
- POLST (Pennsylvania Orders for Life Sustaining Treatment)
- - A living will is a document that expresses your wishes regarding end-of-life care
- - Healthcare power of attorney is a document that enables you to appoint someone to make decisions for you
- - POLST is a document, signed by your physician, that translates your end-of-life wishes into a physician order
- - It’s very important to think about the care you want or don’t want, to discuss these wishes with your physician, family, and friends, and to appoint a decision maker you trust
- - If you don’t have an advance directive and are unable to make you own decisions, it’s possible that people you don’t want making decisions for you will be the ones making decisions
- - It’s never too early to start Advance Care Planning
- - Everyone should have an advance directive, regardless of age
- Just as there is a period at the beginning of life, there is also a period at the end of life. End of life is “when a person is living with, and impaired by, a fatal condition, even if the trajectory is ambiguous or unknown. This period may be years in the case of people with chronic or malignant disease, or very brief in the case of people who suffer acute and unexpected illnesses or events, such as sepsis, stroke or trauma.”
- Recognising a resident’s end of life provides opportunity for assessment of palliative care needs and palliative care planning. There is no one tool that identifies when a resident is approaching this time. The surprise question is suggested as one trigger. So ask yourself of a specific resident ‘Would you be surprised if this resident would die in the next 12 months?’ However, accuracy of this question is relatively low for people without a cancer diagnosis.
In contrast to geriatrics,
palliative care is a specialty
that applies to patients of all ages,
but with special needs linked to dying
in a very broad sense.
Modern palliative care,
understood in its broadest sense
that also includes hospice care,
evolved 50 years ago out of three sources:
(1) the critical societal climate in the 1960s
that challenged the taboo surrounding death and dying;
(2) are form movement within health care
that attacked the technological imperative of medicine,
which neglected the dying and incurably ill; and
(3) a religiously influenced emphasis
on professional virtues like caring,
compassion,
and empathy.
NEUROPALLIATIVE CARE SKILL SET
Effectively communicate prognosis
Estimates from literature
Communicate “best case/worse case”
Manage uncertainty
Master common preference-sensitive decisions
Know major decisions within each subspecialty
Elicit preference accurately
Listen more than talk
Hypervigilant shared decision making
Know how to run family meetings
Be aware of cognitive biases
Effective use of time-limited trials
Detect and manage whole-body pain
Physical symptoms and pain
Psychological symptoms
Existential distress
Social pain
Palliative options at end of life
Withdrawing life-sustaining treatments
Palliative sedation to unconsciousness
Voluntary stopping eating and drinking
Physician-assisted dying
Brain death
https://pubmed.ncbi.nlm.nih.gov/28982489/
Ooookay kan, Bro!
