PALLIATIVE CARE - IN THIS TOGETHER
Not an illness
Time may be limited
Help for all ages, for days, weeks or years
Illness is difficult but my quality of life can be improved
Speaking openly and honestly will help
Treatments for pain and other symptoms
Opportunities to plan ahead
Goal setting to help me live as well as possible
Emotional, spiritual and psychological support
Teamwork will help my care
Hope is important
Embracing me as I am
Realising I am not on my own
Myth - Palliative care is just for people with cancer
PALLIATIVE CARE
- Approach to health that emphasizes quality of life for patients and families facinglife-threatening illness
- Goal is multidisciplinary prevention and relief of suffering by treating pain and other physical, psychosocial and spiritual problems
- Does not hasten or postpone death but makes quality of life the priority for patientsand families
- Does not represent an alternative to treatment but rather can be used alongside curative treatment, especially in chronic disease
PALLIATIVE MEDICINE
- Specialists who formally train in the concepts of palliative care
- Many are regulated through certification by national organizations
- Analogous to sub-specialists who exclusively treat hypertension, diabetes, or stroke
HOSPICE
- System of interdisciplinary care designed for patients at the end of life
- Generally require prognosis of six months or less, but disease-specific criteria exist
- Patients forgo curative treatment while receiving comprehensive inpatient or outpatient symptom relief
https://web.archive.org/web/20210606020543/https://www.scirp.org/pdf/_2016112216165295.pdf
Palliative Care provides treatment and care for people with advanced life limiting illnesses and supports their families and carers. It neither hastens nor postpones death, but affirms life and approaches dying as a normal process.
'End of Life' care generally refers to care provided to a person with an advanced life limiting illness in the last year of their life. Caring for people leading up to their death has always been at the core of Palliative Care practice.
Inpatients and outpatients with advanced cancer should receive dedicated palliative care services, early in the disease course, concurrent with active treatment. Referral of patients to interdisciplinary palliative care teams is optimal, and services may complement existing programs. Providers may refer family and friend caregivers of patients with early or advanced cancer to palliative care services.
https://www.capc.org/documents/download/475/
PRINCIPLES OF MEDICAL ETHICS
Autonomy, beneficence, nonmaleficence, and justice are four of the basic ethical principles used
to guide nurses and clinicians in the care and decision making of
patients. Many of these same standards apply for nurses who are involved
in clinical research as they are a way to ensure that people’s rights are protected as guided by specific moral principles.
https://milnepublishing.geneseo.edu/nursingcare/chapter/ethical-concerns-in-end-of-life-care/
Patients, families and clinicians may face a myriad of ethical dilemmas
when providing end-of-life care: Complex medical scenarios when
deciding to withdraw life support interventions; when to use artificial
hydration and nutrition at the end of life; to issues related truth
telling and disclosure.
https://www.chpca.ca/resource/ethics/
Palliative care, which is available in all primary care settings and at all stages of illness — not just near the end of life — seeks to improve quality of life and relieve suffering for patients diagnosed with chronic, life-limiting conditions. It puts patients and their families at the centre of all decisions and considerations of care. It is also holistic, taking a patient’s spiritual, mental, physical, social, psychological and practical aspects into account. As well, it continues after a patient has died through ongoing support to the bereaved family and friends.
Addiction is rare (less than 1%) in patients taking morphine for pain. However, it is true that after two weeks or more of taking morphine, it should not be halted abruptly. The body needs to be weaned off opiates so it can adjust, which is normal human physiology and not addiction.
https://www.vitas.com/
Delirium
- Haloperidol is often the first-line treatment; other neuroleptics, such as olanzapine, risperidone, and quetiapine, are alternative options.
- For patients with persistent delirium despite first-line neuroleptics, the treatment strategies include escalating the dose of the same neuroleptic, rotation to another neuroleptic, or the addition of a second neuroleptic or other agent.
- In a preliminary trial of hospitalized patients with agitated delirium and advanced cancer, the addition of lorazepam to haloperidol compared with haloperidol alone resulted in a significantly greater reduction in agitation at 8 hours.
Barriers to palliative care implementation, include:
- corporate power (“PC must remain in our service…”);
- denial (“we are already doing so…”);
- personal (resistance to accept end-of-life care);
- misunderstandings (PC seen as death or euthanasia);
- competition (“we have been doing so much better over many years”); and
- conflict.
WHAT IS CANCER?
Cancer is a group of diseases
characterized by uncontrolled growth
and spread of abnormal cells.
If the spread is not controlled,
it can result in death.
Cancer is caused by external factors,
such as tobacco, infectious organisms, and an unhealthy diet,
as well as internal factors,
such as inherited genetic mutations, hormones, and immune conditions.
These factors may act together
or in sequence to cause or promote cancer growth.
Ten or more years usually pass
between exposure to external factors
and detectable cancer in adults.
Treatments for cancer
include surgery,
radiation,
chemotherapy,
hormone therapy,
immune therapy,
and targeted therapy
(drugs that specifically interfere with cancer cell growth).
https://web.archive.org/web/20210608221330/https://www.cancer.org/content/dam/cancer-org/research/cancer-facts-and-statistics/cancer-facts-and-figures-for-african-americans/cancer-facts-and-figures-for-african-americans-2016-2018.pdf
Cancer is a group of diseases
characterized by uncontrolled growth
and spread of abnormal cells.
If the spread is not controlled,
it can result in death.
Cancer is caused by external factors,
such as tobacco, infectious organisms, and an unhealthy diet,
as well as internal factors,
such as inherited genetic mutations, hormones, and immune conditions.
These factors may act together
or in sequence to cause or promote cancer growth.
Ten or more years usually pass
between exposure to external factors
and detectable cancer in adults.
Treatments for cancer
include surgery,
radiation,
chemotherapy,
hormone therapy,
immune therapy,
and targeted therapy
(drugs that specifically interfere with cancer cell growth).
https://web.archive.org/web/20210608221330/https://www.cancer.org/content/dam/cancer-org/research/cancer-facts-and-statistics/cancer-facts-and-figures-for-african-americans/cancer-facts-and-figures-for-african-americans-2016-2018.pdf
ANH (Artificial Nutrition and Hydration), however, does not refer to nutrition and hydration provided through normal means of eating and drinking. Children who are able and wish to eat and drink should be offered food and fluids by mouth. Other terms used in the literature include ‘medically assisted’ or ‘medically provided’ nutrition and hydration; these terms emphasize how ANH does not fundamentally differ from other treatments.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3076180/
Not being able to eat and drink in the same way as before can cause problems, including weight loss and fatigue. It can also make people feel isolated from the social aspects of meals.
https://www.mariecurie.org.uk/
Sensory descriptors associated with neuropathic pain include burning, tingling, pins and needles, shooting and numbness. These symptoms are not diagnostic.
Confirm altered sensation in the area of pain by comparing responses with the non‑painful contralateral or adjacent area of the body:
Confirm altered sensation in the area of pain by comparing responses with the non‑painful contralateral or adjacent area of the body:
- allodynia – painful response to light touch, for example stroking the skin with a finger or cotton wool
- hypoaesthesia – an area of reduced sensation to non-painful or painful stimuli
- hyperalgesia – an exaggerated pain response to stimulus, for example a lowered pin prick threshold
- altered thermal threshold to cold or hot (for example reduced or exaggerated response to a cold metal spoon, or a hot cup of tea).
https://www.palliativecareguidelines.scot.nhs.uk/guidelines/pain/neuropathic-pain.aspx
Autonomic dysfunction can be associated with NP and patients may describe skin temperature changes, sweating or hair and nail changes. Motor weakness and muscle wasting can accompany other symptoms.
Clinical examination must include comparison of the affected area with an unaffected adjacent or contralateral site, and a thorough neurological examination.
https://www.gponline.com/clinical-review-neuropathic-pain/pain/pain/article/1341202
Consider the addition of a tricyclic antidepressant or an anticonvulsant
Amitriptyline, nortriptyline, gabapentin, pregabalin or duloxetine are all used in the management of moderate to severe neuropathic pain. However, the treatment of neuropathic pain remains an unapproved indication for tricyclic antidepressants (TCA).
https://bpac.org.nz/bpj/2014/june/diabetic-peripheral-neuropathy.aspx
Autonomic dysfunction can be associated with NP and patients may describe skin temperature changes, sweating or hair and nail changes. Motor weakness and muscle wasting can accompany other symptoms.
Clinical examination must include comparison of the affected area with an unaffected adjacent or contralateral site, and a thorough neurological examination.
https://www.gponline.com/clinical-review-neuropathic-pain/pain/pain/article/1341202
Consider the addition of a tricyclic antidepressant or an anticonvulsant
Amitriptyline, nortriptyline, gabapentin, pregabalin or duloxetine are all used in the management of moderate to severe neuropathic pain. However, the treatment of neuropathic pain remains an unapproved indication for tricyclic antidepressants (TCA).
https://bpac.org.nz/bpj/2014/june/diabetic-peripheral-neuropathy.aspx
Morphine Sulfate in Palliative Care
https://bit.ly/MorphineSulfateinPalliativeCare
LEGAL ISSUES IN END OF LIFE CARE
Difficult decisions at the end of life: key legal informationThere is no legal obligation to either start or continue life-sustaining treatment if it is no longer in the patient’s best interests or if the patient does not want to receive it. However, the law draws a clear distinction between discontinuing treatment that is no longer of benefit to the patient and taking active and deliberate steps to end the patient’s life. Although it is lawful to administer palliative medication such as opioids and sedatives, even if they may have the secondary and unintended effect of hastening the patient’s death, assisted suicide remains illegal.
- There is no legal obligation to either start or continue life-sustaining treatment if it is no longer in the patient’s best interests to do so
- If an adult patient with decision-making capacity asks for their life-sustaining treatment to stop, their decision must be respected
- It is unlawful to either start or continue treatment against a patient’s wishes
- It is lawful to administer palliative medication such as opioids and sedatives, even if they may have the secondary unintended effect of hastening the patient’s death
- The administration of medication or any other action intended to end a patient’s life is illegal, even if it is at the patient’s request
https://cdn.ps.emap.com/
Is it considered suicide to refuse artificial nutrition and hydration?
No. Everyone has the right to refuse or discontinue a medical treatment. A person at the end of life is dying, not by choice, but because of a particular disease. It is not considered suicide to refuse or stop a medical treatment that cannot bring back health.
Four ethical principles
- Autonomy : Respect the uniqueness and dignity of each person, self, and others.
- Non-maleficence : Prevent harm and removal of harmful conditions.
- Beneficence : Act to remove harm or promote benefit.
- Justice : Treat individuals equally.
Morphine may be used for more than one symptom near the end of life.
In palliative care and hospice settings, morphine is one of the most commonly used pain medications because it generally treats pain effectively, and is usually well-tolerated. Moreover, morphine is readily available in most areas and is usually cost-effective.
Morphine is also effective in treating dyspnea, or shortness of breath, a symptom experienced by a very large number of people at the end of life and sometimes more distressing than physical pain.3 Morphine can reduce the anxiety associated with shortness of breath but actually improves breathing by dilating blood vessels in the lungs and deepening breaths. Other medications in the hospice kit may reduce anxiety, but can actually worsen dyspnea.https://www.verywellhealth.com/morphine-and-pain-side-effects-and-use-1132339
"A professional caregiver’s spirituality, even if it is not religion-based, is an important resource in the provision of care. It provides motivation and direction for compassionate and competent care. While it may be quite different from the patient’s spirituality, it provides grounding for appreciating the importance of the patient’s spiritual needs. At times, a caregiver’s response may disappoint patients who expect the caregiver to join them in their religious practices. However, other patients will feel a deepening trust and comfort when caregivers relate to them in authentic ways and draw from the wells of their own spiritual resources."
https://diigo.com/0hubpk
Is Palliative Approach Indicated?
Would I be surprised if this patient died in the next 6-12 months?
Even if your answer is yes, patient can always benefit from advance care planning. See Communication section.
If no, look for one or more of general indicators
https://ipalapp.com/assess/
Ethical issues that arise towards the end of life may be complex.
Some examples of ethical issues encountered in palliative care are:
- Method and timing of conversations with family members around the imminent death of a loved one
- Deciding when to withdraw futile treatment options and communicating this to the patient and their family
- Advance care planning
- Beneficence
- Respect
- Self-determination
- Truth telling
- Confidentiality
- Informed consent
- Justice and non-maleficence
Guides and Toolkits
- identification
- assessment and care planning
- accessing patient information, and
- place of death.
Rinku Sutradhar
Healthcare Quarterly Vol.18 No.2 2015
WHAT IS PALLIATIVE CARE
Having
been told that she would never get such ideas accepted in medicine
unless she became a doctor, Cicely qualified as a doctor at St Thomas’
Medical School in 1957.
The Palliative Performance Scale (PPS)
has been shown to be both valid and useful for a broad range of
palliative care patients: those with advanced cancer diagnoses or
life-threatening non-cancer diagnoses in clinics, hospitals, or
hospices.
Palliative Care Tools Master List
Ambitions for Palliative and End of Life Care: A national framework for local action 2015-2020
Consider using a syringe driver when:
- The patient is unable to take medicines by mouth due to nausea and vomiting, severe oral lesions, e.g. mucosal ulceration, dysphagia, weakness, sedation or coma
- There is poor absorption of oral medicines
- Pain is not able to be controlled using orally administered medicines
- There is a malignant bowel obstruction and further surgery is inappropriate (therefore avoiding the need for an intravenous infusion or the insertion of a nasogastric tube)
- The patient does not wish to take regular medicine by mouth
An advance care plan may include
a person’s:
• Concerns e.g. for things that they don’t want to happen in future or who will care for loved ones or pets
• Important values or personal goals for care
• Future wishes
• Understanding of illness and prognosis
• Preferences for types of care or treatment that maybe helpful in future and understanding of the availability of these
• Carer emergency care plans.
https://palliativecare.bradford.nhs.uk/Documents/ACP_resource_pack.pdf
FINANCIAL CRISIS
The financial burden is related to caregiversʼ
reduced work hours,
the forgoing of promotions,
increased absences,
and frequent leave.
Caregivers of terminally ill patients are
not hesitant to sell assets,
take out a loan,
or find additional jobs
to pay for their patientsʼ treatment.
However, after a patientʼs death,
the remaining family members have to
take on the economic burden.
Healthcare providers should
collaborate with social work colleagues
to reduce caregiversʼ financial burden.
https://pubmed.ncbi.nlm.nih.gov/30737798/
Oookay kan, Bro!
