In the event I become terminally ill and I am unable to understand, make or communicate my wishes, I direct that my life be prolonged as long as possible using all possible treatments within the limits of generally accepted health-care standards, with the following exceptions (initial those treatments – if any – I do not want, even if they could prolong my life):
I DO NOT WANT the treatments initialed below:
_____ heart-lung resuscitation (CPR)
_____ ventilator (breathing machine)
_____ dialysis (kidney machine)
_____ surgery
_____ blood transfusions
_____ chemotherapy or radiation treatment
_____ artificial nutrition or hydration through a conduit (tube feeding)
_____ antibiotics
https://www.dhss.delaware.gov/dsaapd/files/advancedirective.pdf
Advance Care Planning (ACP) is a process of communication for planning for your future medical decisions. To be effective, this process includes:
Types of advance directives
Advance care planning is recommended for everyone 18 years and older, regardless of health condition. After you complete your advance directive, give copies to your doctors and a loved one.
https://www.prohealthcare.org/patients-families/advance-care-planning/
The goals of advance care planning are four-fold. These goals reflect respect for the principles of patient autonomy (right to self-determination in light of personal interests including goals, preferences, and concerns for one’s family), beneficence (promoting good) and non-maleficence (avoiding harm). In the event of decisional incapacity, they are to:
- Reflection on your goals, values, and beliefs (including cultural, religious, spiritual, and personal)
- Understanding of possible future situations and decisions
- Sharing of these reflections and decisions with those who might need to carry out the plan
Types of advance directives
- Power of attorney for health care – Names who can make health care decisions for you when you cannot.
- Declaration to physicians (living will) – Gives instructions about the care you’d like to receive if you cannot communicate your wishes.
- Do-not-resuscitate (DNR) order – Lets care providers know that they should not perform cardiopulmonary resuscitation (CPR) if your breathing or heart stops; must be signed by your doctor.
Advance care planning is recommended for everyone 18 years and older, regardless of health condition. After you complete your advance directive, give copies to your doctors and a loved one.
https://www.prohealthcare.org/patients-families/advance-care-planning/
- In the event that your heart stops beating and you stop breathing, health care providers will normally perform cardiopulmonary resuscitation (CPR) to try to restart your breathing and heartbeat. However, you may decide that you do not want CPR performed. In this case, you may ask for a Do Not Attempt Resuscitation (DNR) or a Portable-DNR (for use outside of a hospital or nursing home facility) order to be written. The differences between a DNR and an advance directive are: an advance directive is not a medical order, even though it is a legally recognized document; a DNR order is a medical order; a DNR order applies only if your heart stops beating and you stop breathing, while an advanced directive deals with many other medical issues and decisions, such as whether to provide medically assisted feeding or hydration. You may want to include your wishes about DNR orders in your advance directive.
- There is an attempt to provide everyone with CPR unless they indicate otherwise. Attempts at CPR are rarely successful when someone is very frail or has a serious illness, and both failed and successful attempts at CPR may often cause additional suffering. Talking with your doctor or other health providers can help you understand the potential benefits and burdens of CPR and whether a DNR or Portable-DNR order is your preferred choice. A DNR only refers to CPR and does not mean that all other treatments (e.g., pain relief, comfort care, etc.) are stopped.
With recent technological advances, sometimes we can only prolong the process of dying.
Bobillo-Perez et al. BMC Palliative Care (2020) 19:74
https://doi.org/10.1186/s12904-020-00575-4
The goals of advance care planning are four-fold. These goals reflect respect for the principles of patient autonomy (right to self-determination in light of personal interests including goals, preferences, and concerns for one’s family), beneficence (promoting good) and non-maleficence (avoiding harm). In the event of decisional incapacity, they are to:
- Minimize the burden of decision making on the spokesperson and/or family members.
- Reduce the likelihood of conflicts between a patient’s spokesperson, family members and health care providers, and
- Minimize the likelihood of over- or under-treatment,
- Maximize the likelihood that medical care serves the patient’s goals,
How can I be sure the medical staff knows that the patient has a DNR (Do Not Resusitate) order? Tell the doctor in charge as soon as the patient or person making healthcare decisions decides that CPR or other life-support procedures should not be performed. The doctor will then write this on the patient’s chart using terms such as DNR (Do Not Resuscitate), DNAR (Do Not Attempt to Resuscitate), AND (Allow Natural Death), or DNI (Do Not Intubate). DNR forms vary by State and are usually available online.
https://www.nia.nih.gov/health/understanding-healthcare-decisions-end-life
Types of Care: the meaning of "Palliative"
It is important to differentiate:
An Assessment and Outcome Measure for Palliative Care
Quality of life (QOL) in the context of advanced, progressive, incurable illness, is defined as the subjective experience of an individual living with the interpersonal, psychological and existential or spiritual challenges that accompany the process of physical and functional decline and the knowledge of impending demise. A person’s QOL can range from suffering, associated with physical distress and/or a sense of impending disintegration, to the experience of wellness and personal growth arising from the completion of developmental work and the mastery of developmental landmarks.
https://irabyock.org/writings/missoula-vitas-quality-of-life-index-mvqoli/
An Assessment and Outcome Measure for Palliative Care
- However, if you had suffered a major stroke or heart attack and were unconscious and not able to communicate, and were not expected to get better, the doctors may consider that your Advance Care Directive may apply in that situation.
- Pain relief and managing discomfort are always important. If your Advance Care Directive states you want to die a natural death, you will still be given pain relief if needed.
ADVANCE HEALTH CARE DIRECTIVE FORM
https://health.hawaii.gov/eoa/files/2013/04/AHCD.pdf
https://health.hawaii.gov/eoa/files/2013/04/AHCD.pdf
Types of Care: the meaning of "Palliative"
It is important to differentiate:
- palliative care principles which apply to all care, whatever the disease suffered by a patient
- palliative techniques or therapies include medical and surgical therapies or procedures (e.g. stenting, paracentesis, internal fixation of fractures and radiotherapy) that are employed to palliate symptoms and ease suffering but are only a small part of the spectrum of care known as palliative care
- specialist palliative care in some countries is practised in units operated exclusively for palliative care by doctors and nurses who are accredited specialists in palliative care. Whether such specialisation is important or essential is something that can only be debated in the context of national needs and resources.
Specialist Palliative Medicine
https://pharmacopallcare.blogspot.com/2020/09/specialist-palliative-medicine-ika.html
An Assessment and Outcome Measure for Palliative Care
https://irabyock.org/writings/missoula-vitas-quality-of-life-index-mvqoli/
An Assessment and Outcome Measure for Palliative Care
Quality of life (QOL) in the context of advanced, progressive, incurable illness, is defined as the subjective experience of an individual living with the interpersonal, psychological and existential or spiritual challenges that accompany the process of physical and functional decline and the knowledge of impending demise. A person’s QOL can range from suffering, associated with physical distress and/or a sense of impending disintegration, to the experience of wellness and personal growth arising from the completion of developmental work and the mastery of developmental landmarks.
Byock and Merriman, Pall. Med., 12:231-244, 1998
https://web.archive.org/web/20200418040250/https://irabyock.org/writings/missoula-vitas-quality-of-life-index-mvqoli/
As a group, we have targeted the following activities for development:The following are among the risks and harms of tube feeding:
https://wspapsych.org/endlife.php
- → Consultation group;
- → Reading group (e.g., journal articles, books);
- → Presentations by Palliative and End of Life Care members on their own research or writings;
- → Consultation to other health care providers working in palliative and end-of-life care and research;
- → Educational opportunities for other health care providers working in palliative and end-of-life care and research; and
- → Coordinating with community organizations to provide educational opportunities for the general public about palliative and end-of-life care and concerns.
- → Next project is to prepare a list of palliative and an end-of-life care resources (e.g., forms, literature, organizations) that we can have easily available to us in order to better serve our clients.
- Pain and other complications (eg, infection, bleeding) directly associated with placement of tube
- Increased risk of aspiration
- Increased risk of pressure ulcers
- Gastrointestinal symptoms from feeding (eg, diarrhea, constipation, reflux)
- Physical and chemical restraints to prevent patient from pulling out feeding tube
- Fluid overload leading to increased pulmonary or peripheral edema, upper airway secretions
- Can increase the perception of hunger
Palliative care enhances the quality of life of people with a life-limiting illness.
It may include:
- Help with decisions about treatments
- Expert medical care to help with pain and other symptoms at home or in hospital
- End-of-life care
- Social, psychological, emotional and spiritual support
- Support for family, friends and caregivers
- Information about financial, legal and other services
- Bereavement support
When a Muslim is near death, those around him or her are called upon to give comfort, and reminders of God's mercy and forgiveness. They may recite verses from the Qur'an, give physical comfort, and encourage the dying one to recite words of remembrance and prayer.
It is recommended, if at all possible, for a Muslim's last words to be the declaration of faith: "I bear witness that there is no god but Allah.”.
https://hospicefoundation.ie/wp-content/uploads/2020/04/By-your-side-Muslim-Prayers-.pdf
REFINEMENT OF THE AMERICAN COLLEGE OF CARDIOLOGY
COMPETENCY EXPECTATIONS TO EXPLICITLY
IDENTIFY ADDITIONAL PC-RELEVANT COMPETENCIES.
These include:
- 1) managing end-stage and/or
- refractory cardiopulmonary symptoms;
- 2) understanding
- the ethical, psychosocial, and legal aspects
- of device deactivation;
- 3) understanding caregiver burden;
- 4) performing a basic psychosocial evaluation
- for mechanical circulatory support and transplantation;
- 5) discussing medication risks and benefits
- and deprescribing as appropriate within
- the context of a patient’s health priorities
- and life expectancy; and
- 6) understanding team-based,
- multidisciplinary HF care.
https://web.archive.org/web/20210131064533/https://www.jacc.org/doi/pdf/10.1016/j.jacc.2020.11.067
Advance care planning (ACP)
Advance care planning is the process whereby patients, in consultation with healthcare professionals, family members, and other loved ones, make individual decisions about their future healthcare, to prepare for future medical treatment decisions.
These clinical assessment palliative care tools were developed or adapted by Promoting Excellence in End-of-Life Care demonstration projects and national workgroups.
The steps involved in the palliative care therapeutic process that guides the interactions between health professionals, patient and families.
https://sites.google.com/view/providing-palliative-care/home
http://acpww.ca/health-care-professionals/
SIX VALUES IN MEDICAL ETHICS
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2902121/
Ethical and Legal Aspects of Care
https://sites.google.com/view/ethical-and-legal-of-care/home
Advance Care Planning
ADVANCE CARE PLANNING
https://sites.google.com/view/providing-palliative-care/home
Is a patient’s Substitute Decision Maker(s) the same as their next of kin, POA or emergency contact?
No, not exactly. While these are common phrases used in the healthcare system, the correct term to use in Ontario is Substitute Decision Maker(s) or SDM(s) when referring to the person(s) who will make decisions on your patient’s behalf when they are not mentally capable.
http://acpww.ca/health-care-professionals/
Early palliative care involves combining palliative support with standard cancer care shortly after a patient is diagnosed with incurable and/or advanced cancer. Compared with standard cancer care alone, early palliative care improves quality of life, survival, clinical outcomes, mood and healthcare satisfaction in patients with advanced cancers. It may also be less costly than standard care for advanced cancers. There is also a positive effect on carers, who report lower levels of psychological distress and depression than carers of patients in standard cancer care.https://www.all-can.org/efficiency-hub/early-introduction-of-palliative-care-improving-patient-outcomes-and-reducing-costs/
SIX VALUES IN MEDICAL ETHICS
The foundation of medical ethics is supported by four pillars, namely;
- Autonomy - patient has the right to choose or refuse the treatment
- Beneficence - a doctor should act in the best interest of the patient
- Non-maleficence - first, do no harm
- Justice - it concerns the distribution of health resources equitably.
Added to the above four, are two more aspects which form the cornerstones of medical practice:
- Dignity - the patient and the persons treating the patient have the right to dignity
- Truthfulness and honesty - the concept of informed consent and truth telling
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2902121/
Ethical and Legal Aspects of Care
https://sites.google.com/view/ethical-and-legal-of-care/home
Advance Care Planning
- Think- about the future - what is important to you, what you want to happen or not to happen if you became unwell.
- Talk- with family and friends, and ask someone to be your proxy spokesperson or Lasting Power Attorney (LPOA) if you could no longer speak for yourself.
- Record- write down your thoughts as your own ACP, including your spokesperson and store this safely.
- Discuss your plans with your doctor, nurses or carers, and this may include a further discussion about resuscitation (DNAR or Respect) or refusing further treatment (ADRT).
- Share this information with others who need to know about you, through your health records or other means, and review it regularly.
We need to think again
and to think radically
• not in the sense of shiny new interventions
and innovations,
but in the sense of going back
to the roots of humanitarian ethos
and ethics in alleviating suffering
and remembering our common humanity.
‘Small but potent’ acts
of compassion are intricate,
multifaceted and hard to define
• small, yet can make a defining,
life-changing,
death-changing
difference both to the people
that receive them,
and the people that provide them.
What defines them is it that
no matter how scarce the resources,
there is opportunity to enable them;
they may often come from strangers;
they may be unexpected
and unprescribed;
and they make a big difference.
They are not flashy advances
in the way of artificial intelligence
or blockchains
• sometimes they are
an act of ‘stillness’
of being with the affected amidst
the urgency of crises.
But they are profound
and far-reaching;
and will require immense courage
and leadership from
the humanitarian sector to get behind.
CPR – Key Information
CPR survival rates are low in the nursing home.
Overall, just 3 out of 100 residents (3%) will survive.
CPR survival rates are believed to be lower
for residents with COVID-19.
Risks of CPR include:
brain damage,
broken ribs, and/or
organ damage.
Requires intubation and ventilator support.
https://web.archive.org/web/20210601114741/https://www.optimistic-care.org/docs/pdfs/NH_Advance_Care_Planning_During_a_Crisis.pdf
What is ACP?
Advance Care Planning (ACP)
is the process of communication among
care recipients, caregivers and health providers
about future medical or personal care
considering aspects
such as the disease prognosis,
benefits and harms of treatment,
values and preferences of the care recipient.
It helps to ensure the wishes
of the care recipients would be conveyed,
and met when they could not communicate.
Care recipients could indicate
their preferences
and document it by making an advance directive (AD)
to refuse life-sustaining treatment (LST)
such as cardiopulmonary resuscitation,
artificial ventilation,
artificial nutrition
and hydration (tube feeding), etc.
AD is activated when
the care recipient is “terminally ill,
in a state of irreversible coma
or in a persistent vegetative state”
and have become mentally incompetent.
An Advance Care Plan May Include:
- Identification of your ‘person responsible’ who will be your substitute decision maker.
- Specific requests for care or treatment consideration.
- Discussion about your disease trajectory and what you might expect in the future.
- Discussion about the legal appointment of an ‘Enduring Guardian’ who will make health & life style decisions on your behalf if you are not able to.
- Documented health care & medical treatment choices to guide others in making substitute decisions on your behalf.
Okay kan, Bro!
IKA SYAMSUL HUDA MZ
