Palliative care that is not end-of-life care could include care for a child with a life-limiting genetic condition who is expected to live for more than 12 months
End-of-life care services as including ‘physical, spiritual and psychosocial assessment, and care and treatment delivered by health professionals and ancillary staff’ provided to people who are ‘likely to die within the next 12 months’.
End-of-life care does not include euthanasia, assisted suicide or voluntary assisted dying.
End Of Life Decision Making
Emotional difficulties in end of life decision making
- Some members of the healthcare team, or people who are close to the patient, may find it more difficult to contemplate withdrawing a life-prolonging treatment than to decide not to start the treatment in the first place. This may be because of the emotional distress that can accompany a decision to withdraw life-prolonging treatment, or because they would feel responsible for the patient’s death. However, you should not allow these anxieties to override your clinical judgement and lead you either not to start treatment that may be of some benefit to the patient, or to continue treatment that is of no overall benefit.
ADVANCE CARE PLANNING (ACP)
What is Advance Care Planning?
Advance Care Planning (ACP) is a concept
that was introduced internationally
in the late 1980s.
It is a process of discussion and shared planning
for future health care that assists the individual
to identify their personal beliefs and values
and incorporate them into plans for their future health care.
ACP assists in the provision
of quality health care and treatment.
It is becoming increasingly important,
particularly with the growing range
of medical treatment options available
and the enhanced recognition of the importance
of patient involvement in medical decisions.
An advance care plan includes
what is meaningful to you,
such as people and pets,
your values
and the ways you would like
those caring for you
to look after your spiritual
and emotional needs.
It can also cover
what sort of funeral you would like,
whether you want to donate your organs,
whether you want to be buried or cremated,
where your important papers are
and whether you have in place
an enduring power of attorney
or advance directive.
https://www.hqsc.govt.nz/our-programmes/advance-care-planning/about-acp/
Death and dying will affect all of us.
It’s a part of life.
And that means everyone has a role
to play in palliative care.
Six guiding principles have been identified
as fundamental to ensure that
all people experience
the palliative care
they need.
https://www.caresearch.com.au/caresearch/tabid/6066/Default.aspx
When patients choose to begin palliative care, they receive a
formal assessment of their health early in the process. Symptoms most
commonly addressed include:
- Pain or discomfort
- Shortness of breath
- Fatigue
- Anxiety
- Depression
- Lack of appetite
- Nausea
- Constipation
- Adjusting to and living with the diagnosis of a serious health condition
- Sleep problems
What can you expect from palliative care?
Palliative care is tailored to each individual's needs, so it looks a little different for each person. A palliative care plan may include one or more of the following goals:
https://www.mayoclinic.org/tests-procedures/palliative-care/in-depth/palliative-care/art-20047525
- Manage symptoms, such as pain or shortness of breath
- Ease treatment side effects, such as fatigue or nausea
- Find strategies to help you adapt to physical and life changes that can accompany serious illness
- Cope with feelings of depression, anxiety or grief
- Address social, financial or spiritual issues that are affecting you and your family
- Inform you and family about your illness, and the pros and cons of treatment options
- Identify and access programs and resources to support you throughout your illness
- Make decisions that align with your personal values and goals
The last or terminal stage of dementia is characterised by:
- • Loss of ability to communicate meaningfully
- • Difficulty swallowing and very poor nutritional intake
- • Incontinence of bowel and bladder
- • Sleeping most of the time
- • Inability to change position, sit unsupported, hold head up or smile
- • Episodes of fever and infection
- • High risk of pressure injury, hip fracture, pneumonia and urinary tract infection; all of which are associated with the risk of death within six months (inconsistent with days and weeks).
- Nociceptive pain is caused by immediate tissue threat or injury, such as in cancer progression into previously healthy tissue.
- Somatic nociceptive fibers are highly myelinated, causing rapid transmission of pain impulses with discrete localization of pain.
- Visceral nociceptive fibers are less myelinated and transmit more diffuse, poorly localized symptoms such as cramping. In visceral abdominal cancers, both systems may be activated–visceral pain from, for example, bowel involvement, and somatic pain from invasion of the parietal pleura.
- Neuropathic pain, on the other hand, may develop from neurotoxic effects of chemotherapeutics, metabolic microvascular conditions such as diabetes, infectious diseases such as HIV, or direct neoplastic invasion of neural tissue. It may be felt as a numb or tingling sensation, hypersensitivity, or abnormally severe and altered response to minor stimulation known as allodynia.
Triggers that suggest that patients could benefit from a palliative care approach include:
http://www.mhpcn.net/palliative-care-toolbox
- Surprise Question: “Would you be surprised if this person were to die in the next year?”
- General indicators of decline: deterioration, advanced disease, decreased response to treatment, choice for no further disease modifying treatment
- Disease specific indicators of decline
Use validated tools to identify a patient who may be entering the last year of life
- Use validated tools to identify a patient who may be entering the last year of life
Be aware of the challenges when discussing prognosis of chronic diseases
Demonstrate the use of the Edmonton Symptom Assessment Scale and Palliative Performance Scale
Explain and counsel patients/families about Advance Care Planning, Goals of Care and DNR
Understand how to treat pain and dyspnea at end of life
Understand how to accurately complete a death certificate
http://thehub.utoronto.ca/family/palliative-care-2/
TERMINAL CARE: CARE IN THE LAST DAYS OF LIFE
https://pharmacopallcare.blogspot.com/2020/09/terminal-care-care-in-last-days-of-life.html
- Pain affects both the physical and psychological wellbeing of patients and should not be treated with pharmacotherapy alone.
- The model of WHO analgesic ladder provides guidelines for choosing the analgesic agents, but has its limitations.
- Incorporating the latest paradigm of neuromatrix theory, both acute and chronic pain should be best managed with a broader perspective incorporating multimodal non-pharmacological and supportive treatments, illustrated by the concept of interacting domains on a broad platform as presented in this article.
- A—Physiotherapy and physical therapy
B—Mind–body integration (e.g. yoga, meditation and religious support)
C—Hypnosis and relaxation therapy
D—Acupuncture
E—Chiropractic
F—External rub/lotions
G—Other CAM options (Tai chi, Tui Na)
H—Muscle relaxants (e.g. cyclobenzaprine, baclofen and dantrolene)
I—Injectable agents (steroids, local anaesthetics)
J—Interpersonal reinforcement (e.g. support group)
K—Anticonvulsants (e.g. gabapentin, pregabalin and lamotrigine)
L—Antidepressants (e.g. tricyclics, SSRI, SNRI)
M—Compounds that act synergistically with opioids like cannabinoids (nabilone)
N—Cognitive behaviour therapy and psychological counselling
O—Surgical and neurosurgical procedures (e.g. spinal cord stimulation, deep brain stimulation, spinal delivery of opioids, ganglion ablation by phenol or electrofrequency, sympathectomy) - Different levels of pain severity and chronicity necessitate different analgesic platforms of management, and the clinician should move up or down the appropriate platform to explore the various treatment options as per the status and needs of the patient.
- A generalized representation of a four-step analgesics ladder. Such four-step ladder, as opposed to the 1986 “ladder”, reflects the advances in nonopioid modalities application for better pain relieving. The integrative medicine therapies can be adopted in each step for reducing or even stopping the use of analgesics to all types of pains. If the non-opioids and weak opioids failed, minimally invasive interventions in step 3 can be recommended before upgrading to strong opioids.
Symptom Management
Links to best-practice tools from around the world to support primary care providers in the delivery of palliative care. Tools are organized according to the 3-step model of best practice proposed by the Gold Standards Framework (GSF): Identify, Assess, and Plan.
DRUG AVAILABILITY IN PALLIATIVE CARE
https://pharmacopallcare.blogspot.com/2020/09/drug-availability-in-palliative-care.html
Assessment Tools
- ESAS (Edmonton Symptom Assessment Score) is a valid and reliable patient self-assessment tool that can be used to screen for the intensity of nine common symptoms experienced by patients: pain, tiredness, nausea, depression, anxiety, drowsiness, lack of appetite, well-being and shortness of breath. ESAS has been translated into many languages. At cancer centres across the province, symptom severity is routinely screened using the ESAS.
- Palliative Performance Scale (PPS)
- Ken Rockwood 9 point Frailty Tool (Dalhousie University)
https://www.cclg.org.uk/CSIOR/Symptom-management-in-palliative-care
- It would be incorrect not to acknowledge the importance of non-medical aspects of palliative care and therefore this should be read alongside the sections “an overview” and “regional setups” of palliative care.
- “Care of the dying extends far beyond pain and symptom management – important though those are.”
- If you are reading this as a member of the community multi-disciplinary team (CMDT) please be reassured that you would never be left to palliate a child or young person with cancer alone – there will always be input and advice from the patient’s specialist centre team.
Myth: Dying is similar to the movies, where people take a last breath surrounded by family and friends.
Fact: This may be the situation for some people, but like television representations of births, life is more complex and varied. Dying is different for everyone depending on age, gender, illness and mobility. Unfortunately, not all deaths are peaceful and some people need a lot of physical and emotional support to assist them to die.
https://palliativecare.org.au/wp-content/uploads/dlm_uploads/2016/12/20151109_myths_updated.pdf
When a person is likely to die
within the next few days or hours
there are ‘5 Priorities for Care’,
which should be applied:
1. The change in the patient’s medical condition is
recognised and communicated clearly,
decisions made and actions taken
in accordance with the person’s needs and wishes.
These are regularly reviewed
and recorded in the patient records.
2. Sensitive communication
takes place between staff and the dying person,
and those identified as important to them.
3. The dying person,
and those identified as important to them,
are involved in decisions
about treatment and care
to the extent
that the dying person wants.
4. The needs of families and others
identified as important
to the dying person are actively explored,
respected and met as far as possible.
5. An individual Plan of Care,
which includes food and drink,
symptom control and psychological,
social and spiritual support, is agreed,
co-ordinated and delivered with compassion.
https://midnottspathways.nhs.uk/media/1188/very-final-end-of-life-care-guidance-full-v6.pdf
Managing Pain in Palliative Care
Oooookay kan, Bro!
