For whatever reason you are considering starting a HPCT there are essential preliminary tasks:
- Perform a needs assessment to evaluate the wisdom of a palliative team e.g. if your hospital is a Maternity Hospital it makes no sense. However if it is a general hospital with an oncology service and possibly other specialists it makes good sense.
- Enrol nursing, medical, social work, pastoral and other colleagues in a working group to develop a proposal for formal presentation to your institution
- Find a sympathetic administrator / planner who will support your thinking and proposal
- Meet with Hospital Administration and present your idea/proposal/costings
- Get advanced training in palliative care, read and surf the many good palliative sites on the internet if available
- Meet with colleagues in other disciplines, oncology, surgery, medicine to introduce yourself and the concept of palliative care. Their understanding and collaboration is essential
- Meet with pharmacy administration to enrol their support and inform them of the principles, practice and pharmacopoeia of palliative care. You must be sympathetic to there concerns re: increased workload, overtime budget etc.
https://web.archive.org/web/20200726052034/https://www.aaem.org/UserFiles/file/PalliativeCare.pdf
Common causes of suffering in seriously ill:
- • Pain
- • Dyspnea
- • Nausea/vomiting
- • Weakness & fatigue
- • Insomnia
- • Anorexia +/-cachexia
- • Incontinence
- • Constipation
- • Agitation/Delirium
- • Anxiety
- • Depression
- • Sense of well-being
- • Uncertainty about future
- • Fear of disability
- • Fear of death
- • Hopelessness
- • Remorse
- • Loneliness
- • Loss of
- – Meaning/Role
- – Control
- – Dignity
- – Autonomy
Hospital Palliative Care Unit
https://bit.ly/HospitalPCU
- Every person is different and symptoms experienced at end of life vary. Some common symptoms are pain, constipation, nausea, tiredness, breathlessness, fatigue and delirium.
In most cases symptoms can be controlled to a comfortable level, but some symptoms may not disappear completely. - Relief of symptoms is one of the major aims of the palliative care team.
- As a carer, you can help the person you are caring for by assisting them in recognising and managing their symptoms. Only do this if you feel comfortable doing so and if your relative is happy for you to do so. Otherwise, contact your GP or a palliative care team member if you are concerned about symptom management.https://www.betterhealth.vic.gov.au/health/ServicesAndSupport/Palliative-care-dealing-with-common-symptoms?viewAsPdf=true
The epidemiology of dying is evolving. The verification of a terminal illness from a patient’s usual physician is important as death now often follows an extended period of health decline without a clear entry point to the dying phase. The use of advanced interventions has made conversations around health care planning and eventual hospice care that much more important. Novel therapies are also disrupting abilities to accurately prognosticate outcomes of severe illness, leading some health systems to use pathways to trigger Palliative Medicine consults, though at present care pathways in Palliative Medicine are rare.
https://www.mdpi.com/2227-9032/7/1/22/htm
The Symptom Assessment Scale
is a patient-rated tool that clinicians use to measure the amount of
distress caused by seven of the most common symptoms in palliative care.
https://ahsri.uow.edu.au/pcoc/assessment-tools/index.html
The Scottish Palliative Care Guidelines reflect a consensus of opinion about good practice in the management of adult patients with life limiting illness
https://www.palliativecareguidelines.scot.nhs.uk/- It can often be difficult to be certain that a person is dying, but it is essential to recognize the signs of dying in order to appropriately care for people at the end of life.
- An individualised care plan including the areas of symptom control and anticipatory prescribing should be created.
- Follow the principles of pain management used at other times when caring for people in the last days of life, for example, matching the medicine to the severity of pain and, when possible, using the dying person's preferences for how it is given. Consider non-pharmacological management of pain in a person in the last days of life.
Key clinical indicators can also help you gauge the life expectancy of your patients. It is particularly indicative of a life expectancy of six months or less
if you observe any of the following general criteria in patients with
chronic illnesses: unintentional weight loss of 10 percent or more of
total body weight, recurrent infections (e.g., aspiration pneumonia,
infected decubitus or pyelonephritis), increasing hospitalizations,
serum albumin less than 2.5 and functional decline.
https://www.aafp.org/fpm/2008/0300/p18.html
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5371025/
Dispelling the Myths About Hospice and Palliative Care
- MYTH:
I can only get palliative care in hospital
FACT: Palliative care services are offered in many places, including hospitals, hospices and in your own home.
- MYTH:
Palliative care manages pain through the use of addictive narcotics.
FACT:
Palliative care is whole person care that provides psychosocial and
spiritual care along with pain and symptom management.
- MYTH:
Hospice and palliative care accelerates death.
FACT:
Hospice and palliative care aims to neither prolong nor accelerate
death but rather ensures quality of life until the very end.
- MYTH:
Hospice and palliative care is just for people with cancer
FACT: All those who are diagnosed with a chronic life-limiting illness can benefit from hospice and palliative care
- MYTH:
Hospices are generally just for old people
FACT: Hospice and palliative care is provided to people of all ages – from infancy to adulthood.
- MYTH:
Everyone has access to hospice and palliative care
FACT:
Though every person has the right to hospice and palliative care, there
are many around the world who do not have access to hospice and
palliative care. For example, in Canada, only 16-30% of people have
access to hospice palliative care.
- MYTH:
Having hospice and palliative care means you will die soon.
FACT:
Hospice and palliative care is not just for the end of life. It is a
holistic approach that includes caregiver support, spiritual care,
bereavement and much more.
https://www.chpca.ca/INSOMNIA
Some examples of sedating antidepressants include Amitriptyline, Mianserin and Doxepin. This group of medications is a useful option for depressed patients with insomnia. The hypnotic dose used is lower than the recommended dose to manage depression. The Selective Serotonin Receptor Inhibitor (SSRI) group of antidepressants (e.g. Fluoxetine, Sertraline) is more stimulating and is likely to cause insomnia if taken close to bedtime. Because there is little evidence to establish the efficacy and safety of these drugs in nondepressed insomniacs, this group of medications is not recommended as the first line treatment for insomnia.
http://www.fmshk.org/database/articles/p20p25newsletteroct08insomniainpalliativecare.pdf- Venous thromboembolism (VTE) is a common complication of malignancy which carries a poor prognosis. This Fast Fact discusses the approach to VTE in patients with advanced cancer.
- The patient’s prognosis and preferences should be considered prior to starting anticoagulation therapy. Clinicians should work with hospice agencies to determine an affordable plan to safely administer and monitor anticoagulation for acute VTE in hospice patients. Clinicians should prepare patients who decide to initiate anticoagulation for discontinuing it once expected survival is short or worsening risks such as uncontrolled INR become apparent.
- *Major bleeding includes any bleeding associated with death, located at a critical site (intracranial, intraspinal, intraocular, retroperitoneal or pericardial area), resulting in the need for a transfusion of at least two units of blood or leading to a drop in hemoglobin of at least 2.0 g per deciliter.
- Assess whether patient is at risk of VTE. If so, take into account any risk of bleeding and expected prognosis; and then discuss with the patient whether they wish to have active prophylaxis with anti-embolism stockings and low molecular weight (LMW) heparin as appropriate, balancing risks and benefits to optimise quality of life. If the patient is in the last few days or weeks of life then thromboprophylaxis is often not appropriate, and is not routine. The best evidence in favour of thromboprophylaxis is in potentially reversible co-existing acute conditions e.g. patient admitted to hospital for intravenous antibiotics for community acquired pneumonia.
Signs and Symptoms at the End of Life
https://bit.ly/SignsandSymptomsattheEndofLife
Person-centred palliative care
‘Person-centred care’ means that:
- you are at the centre of
planning and decision-making around your end of life and palliative care- your individual, cultural and religious needs are considered when care is planned
- you are treated in the way you want to be treated
- your preferences and values are recognised and respected
- you are treated with respect and dignity whatever your age, cultural background, religion or sexual orientation.
By responding to your needs and those of your family in this way, your palliative care team can help you make the most of each day.https://www.betterhealth.vic.gov.au/
Interprofessional collaboration occurs when health professionals from different disciplines work together to identify needs, solve problems, make joint decisions on how best to proceed, and evaluate outcomes collectively. Interprofessional collaboration supports patient-centred care and takes place through teamwork.
https://pubmed.ncbi.nlm.nih.gov/20925291/
Palliative care involves an interprofessional collaborative approach in working with patients and their families and caregivers by providing patient-centered and individualized pain relief compassion, caring, and overall minimization of symptom severity. Because palliative care patients most often also have one or more chronic illnesses, the need for the interprofessional practice model is even more important. This type of collaborative care is often referred to as “comfort” care or “end-of-life” care, with the focus being on improving quality of life for both the patient, family, and both family and non-family caregivers.
https://austinpublishinggroup.com/palliative-care/fulltext/apc-v1-id1006.php
In particular, the limits of information sharing have been pointed out as important barriers to the quality of inter-professional collaboration
https://www.oatext.com/inter-professional-communication-in-palliative-care-general-practitioners-and-specialists-in-switzerlandc.php#gsc.tab=0
Interdisciplinary collaboration and teamwork are necessary components for collaborative communication to occur between team members in a hospice admissions setting. Team interactions require trust, confidence and an equal effort by all team members. Effective communication can be achieved through collaborative communication between team members in Interdisciplinary Team (IDT) meetings and research has been done to support this concept.
https://symbiosisonlinepublishing.com/palliative-medicine-care/palliative-medicine-care16.phpSpecific recommendations are as follows:
- The time to start palliative care is as soon as a patient's cancer becomes advanced
- For newly diagnosed patients with advanced cancer, the Expert Panel suggests early palliative care involvement within 8 weeks after diagnosis
- Inpatients and outpatients with advanced cancer should receive dedicated palliative care services early in the disease course concurrent with active treatment.
General and Heart-Failure – Specific Barriers to Improved Palliative Care for Patients with Heart Failure.
General Barriers
- ☛ Misperception among clinicians that palliative care is appropriate only at the end of life and that patients will react negatively and lose hope if palliative care is introduced.
- ☛ Workforce shortages throughout palliative care disciplines, including among physicians, nurses, social workers, and chaplains, especially in home and outpatient settings.
- ☛ Inadequate training, supervision, and support of family caregivers, who provide most of the day-to-day care and care coordination for patients with serious illness.
- ☛ Lack of reimbursement for personal care and home medical services beyond timelimited episodes and for team-based care.
- ☛ Insufficient organizational capacity, in part because of fee-for-service payments and lack of regulatory requirements, oversight, and accreditation standards.
- ☛ Inadequate evidence base and limited funding for research regarding pain and symptom management, communication skills, care coordination, and optimal care models.
Heart-Failure–Specific Barriers
- ☛ False expectations among patients and clinicians given frequent exacerbations followed by partial recovery, resulting in avoidance of discussions about likely future outcomes.
- ☛ Prognostic uncertainty, which can distract clinicians from patient and family need as the indication for concurrent palliative care.
- ☛ Lack of training for cardiologists in the core principles and practices of palliative care (pain and symptom management; communication about future goals and priorities for care; and assessment and support of family caregivers).
- ☛ Poorly coordinated care for patients with heart failure and coexisting conditions.
- ☛ Assumptions by some clinicians that patients’ sole priority is life prolongation, to the exclusion of attention to quality of life.
- ☛ Inadequate support for managing recurrent exacerbations of dyspnea and other heart-failure symptoms in community settings.
Serious-Illness Care 2.0 — Meeting the Needs of Patients with Heart Failure
Haider J. Warraich, M.D., and Diane E. Meier, M.D.
https://www.nejm.org/doi/full/10.1056/NEJMp1900584
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