These 7 antibiotics can cover almost all infections caused by Gramnegative, Gram-positive, aerobic, anaerobic and extended-spectrum beta-lactamase (ESBL) microorganisms in palliative care patients. We can therefore conclude that palliative patients with infections can be treated with ceftriaxone, cefepime, ampicillin, amikacin, tobramycin, ertapenem and teicoplanin administered subcutaneously when appropriate off-label use authorisation has been obtained and a benefit assessment performed.
https://www.oatext.com/pdf/GDT-2-121.pdf
How to insert an NG Tube EASILY!!!
- ☛ being treated as an individual, with dignity and respect
- ☛ being without pain and other symptoms
- ☛ being in familiar surroundings
- ☛ being in the company of close family and/or friends.
- ☛ identify patients with a year or less to live
- ☛ initiate conversations about end of life care
- ☛ put end of life care plans in place.
The best sites to use for subcutaneous infusion of fluids are the lateral aspects of the upper arms and thighs, the anterior chest below the clavicle and occasionally, the back or abdomen (Graham 2006).
Areas which should not be used are:-
- • Lymphoedematous limbs, e.g. avoid arms on the same side as previous breast/axillary surgery. A cannula breaches skin integrity, thus increasing the risk of infection in a limb which is already susceptible
- • The abdomen when distended by ascites or abdominal disease
- • Sites over bony prominences. The amount of subcutaneous tissue will be diminished, impairing the rate of absorption
- • Previously irradiated skin area. Radiotherapy can cause sclerosis of small blood vessels, thus reducing skin perfusion
- • Sites near a joint; excessive movement may cause cannula displacement and patient discomfort
Sites should be rotated and giving sets changed every 5 days or before if any signs of site reaction to minimise tissue damage (see monitoring section).
https://www.harrogateandruraldistrictccg.nhs.uk/clinicalguidance/palliative-care/Fatigue or “asthenia” is a subjective symptom, ranging from tiredness to exhaustion, that is out of proportion to recent activity. It occurs as a result of disease, emotional state and/or treatment, and may be acute or chronic.
Major features include:
- easy tiring and reduced capacity for activity;
- generalized weakness; and
- impaired concentration, with memory loss and emotional lability.
Fatigue usually has multiple causes and may be related to underlying disease, treatments, or a variety of reversible and non-reversible factors.
Symptom problems, psychosocial factors and mood disturbances, such as depression and anxiety, may all disrupt sleep and/or contribute to fatigue.
Monitor closely for drug interactions and adverse effects.Dose varies with indication.
Short term use of dexamethasone. Most commonly used at 2-4mg/d.
Methylprednisolone, 16 mg twice daily for one week;
although very rarely used also significantly improved fatigue.
Limit duration of treatment for fatigue.No benefit shown beyond 7 to 15 days.
Adverse effects increase with longer treatment and higher doses.
Give earlier in day to reduce insomnia.
Physicians believe to be effective, but evidence is inconsistent.
https://www.fraserhealth.ca/-/media/Project/FraserHealth/FraserHealth/Health-Professionals/Professionals-Resources/Hospice-palliative-care/Sections-PDFs-for-FH-Aug31/9524-18-FH---Sym_Guide-Fatigue.pdf
List of Medicines Commonly Used in Palliative Care
- Palliative care is attending to the physical, emotional and spiritual suffering of patients and families who are dealing with a serious illness. Hospice is a type of palliative care that we provide in the last six months of life. And I would say hospice is even distinct from end-of-life care, which is really the care of patients in the last days and hours of their lives.
- In our country, hospice is overwhelmingly provided in a patient's home or in a nursing home, whereas palliative care is available at any stage of an illness. And so we can see people in the hospital; we can see people in clinics when they come to see their oncologist or their cardiologist. With palliative care, you can have us on your team just right alongside care like chemotherapy or dialysis — we're meant to attend to your quality of life. And in an ideal circumstance, we will be there when you decide to transition to hospice.
- Recognising dying can be challenging for health and care professionals. There is often uncertainty about how long a person has left to live and the signs that suggest that someone is dying are complex and subtle.
- Some health and care professionals are uncomfortable discussing how long someone has left to live, and sometimes do not have the skills and confidence to give difficult news or talk about the dying process. Adequate training and continued support is important to help health and care professionals to communicate sensitively and effectively.
- Effective shared decision-making can help to ensure that people get the right care in the last days of their life. Health and care professionals can help to achieve this if they have the right communication skills, and have a good rapport with the dying person and those important to them.
For a patient who has an advanced life-threatening illness and who is dying, artificial hydration and nutrition may not provide many benefits. Artificial hydration and nutrition in these patients may make the patient live a little longer, but not always.https://familydoctor.org/artificial-hydration-and-nutrition/
- The Liverpool Care Pathway was developed in 1997 as a pathway to provide a template to non-Palliative Medicine specialty providers of evidence-based, multidisciplinary care of patients at the end-of-life and included support for caregivers and families with the intent to provide Palliative Care across the entire United Kingdom health system.
- The data from the program showed that it improved knowledge of when and how to stop futile therapies and how to communicate with patients and families about death and dying. This pathway also provided evidence that improving communication between medical staff and between the medical staff and patients and their families had positive outcomes for patients.
- The program was abruptly discontinued in 2014 due to various criticisms from national reviews. The discontinuation of the Liverpool Care Pathway, which was the most used end-of-life care pathway ever, raised the question of whether end-of-life care pathways for the treatment of the dying were effective.
• Opioids are the mainstay of pain management in patients with cancer
• Morphine is considered first choice opioid:
– familiarity
– low cost
– available formulations
– proven effectiveness
• Reasons for opioid switching include:
– intolerable adverse effects limiting dose escalation
– inadequate response, despite escalation of current opioid
– renal/hepatic impairment
– development of analgesic tolerance
– patient factors
• Historically, 10 mg of parenteral morphine has been considered to be the standard comparator
• Equianalgesia, or equipotency, can be achieved by accounting for these factors
– dose corrections
– alternate route of administration
• Equianalgesic dose:
– The dose at which two opioids (at steady state) provide approximately the same pain relief
– Two opioids can be made equipotent , resulting in equianalgesia
https://guildfordadvancedcourses.co.uk/wp-content/uploads/2019/10/2-Equianalgesia.pdf
Communicating with the Patient in Palliative Care
https://bit.ly/CommunicatingPC
The Core Curriculum contains the most important Fast Facts within a particular palliative care domain or speciality area. These can be used to supplement a Generalists Palliative Care training initiative, for on-boarding new palliative care specialists, for health professional trainees working in hospice and palliative medicine or for “just in time” education to meet a clinical problem.
https://www.mypcnow.org/fast-facts/core-curriculum/The clinical priorities of terminal care are:
- talking to the person, the family and carers
- managing symptoms
- ensuring medicines are available for symptom management
- withdrawing non-essential medicines
- advising other health professionals involved in the person’s care.
Principles of Palliative CareIf it is thought that a person may be entering the last days of life, gather and document information on:
Palliative care incorporates the whole spectrum of care — medical, nursing, psychological, social, cultural and spiritual. A holistic approach, incorporating these wider aspects of care, is good medical practice and in palliative care it is essential.The principles of palliative care might simply be regarded as those of good clinical practice, whatever the patient’s illness, wherever the patient is under care, whatever his / her social status, creed, culture or education.https://hospicecare.com/what-we-do/publications/getting-started/6-principles-of-palliative-care
- the person's physiological, psychological, social and spiritual needs
- current clinical signs and symptoms
- medical history and the clinical context, including underlying diagnoses
- the person's goals and wishes
- the views of those important to the person about future care.
This is called a holistic approach, because it deals with you as a "whole" person.
Palliative care isn’t just for the end of life. You may receive palliative care earlier in your illness while you are still receiving other therapies to treat your condition.
https://www.nidirect.gov.uk/
The end of life care provided may include listening and talking with you after news about the possibility of the end of your life, being empathetic to your concerns and needs, and referring you to more specialised support or care if required.
https://www.betterhealth.vic.gov.au/
Lynn’s end-of-life trajectories can assist clinicians in identifying individuals who may benefit from hospice palliative care. The trajectories show three typical patterns of decline for individuals with cancer, chronic illness and frailty:
- 1. For most cancers there is a short period of obvious decline leading to death.
- 2. The trajectory for patients with chronic organ failure is characterized by long-term disability with periodic exacerbations and unpredictable timing of death.
- 3. For those with frailty and dementia, the pattern is characterized by a slow dwindling course to death.
It is important to remember that there may be considerable variation within these patterns and between individuals. In addition, awareness by health professionals of signs of impending death is one way to facilitate recognition and preparation for death.
https://rnao.ca/sites/
The experience we call death occurs when the body completes its natural process of shutting down, and when the spirit completes its natural process of reconciling and finishing. These two processes need to happen in a way appropriate and unique to the values, beliefs, and lifestyle of the dying person.
https://www.npr.org/programs/death/readings/essays/hospice.htmlEmotional 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.
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
Dementia describes a collection of symptoms that are caused by disorders affecting the brain. The condition is fatal. There is a typical pattern of increasing symptoms for the person living with dementia. These symptoms can impact a person’s ability to recognise people, places and events, communicate, eat, get dressed, walk and move about independently, control their bladder and bowel, and swallow food and fluids. Supports for the person living with dementia will vary over time, and can be impacted by co-occurring health conditions.
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).
There are two broad classes of pain that are readily distinguished and have markedly different treatment requirements:
- 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://bit.ly/TerminalCarePC
Therefore
a palliative approach to care may be useful across the illness and
ageing trajectory and not just the terminal phase. Although it is
recognised that people with life-limiting illnesses other than cancer
can benefit from palliative care, in 2017 almost 4 in 5 episodes of
hospital based specialist palliative care (77.6%) involved a cancer
diagnosis.
https://www.palliaged.com.au/tabid/4338/Default.aspx
A basic tenet of palliative medicine is to evaluate and treat all types of suffering.
Physical pain at EOL is frequently accompanied by other types of pain,
such as psychological, social, religious, or existential pain. However,
this review will focus on the pharmacologic management of physical pain.
https://www.the-hospitalist.org/hospitalist/article/125830/how-should-common-symptoms-end-life-be-managed
- 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
Many
people living with advanced disease struggle with the physical and
emotional effects of their illness and treatment. Regardless of where
they are in their journey, patients sometimes need help to manage their
pain, nausea, anxiety or other symptoms.
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://bit.ly/DrugAvailabilityPC
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)
Palliative
Care Toolkit Best-practice tools from around the world are provided
here to support primary care providers with palliative care delivery. 3-Step Best Practice Model
https://www.ontariopalliativecarenetwork.ca/en/node/31896Mengapa perlu ada Perawatan Paliatif?
Jawab: Meskipun tidak semua orang akan sakit kanker,
tapi kita semua pasti akan mati (yang pasti dengan rasa kesakitan apapun).
Perawatan paliatif tidak hanya untuk pasien kanker.
Perawatan paliatif itu untuk kita semua, untuk ibu, untuk bapak, untuk mbah, untuk cucu dan cicit.
Kita semua tidak ada yang bisa bebas dari penyakit, sakit dan kematian.
Effective
integration can happen at many time-points including: at initial
diagnosis; when treatment strategies change; or when the primary team,
family or patient needs further support.
https://www.pogo.ca/satellite-manual/5-0-palliative-care/5-1-palliative-care-overview/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.
Please
note that some of these diagnostic approaches and treatment options
could be applied to patients without life-limiting illness, but the treatment approaches should be used with caution in cases not relating to the end-of-life patient care. However,
the approach of searching for an underlying etiology of a given symptom
and attempting to alleviate that symptom can and should be applied to a
broader population of general medicine inpatients.
https://www.cancertherapyadvisor.com/home/decision-support-in-medicine/hospital-medicine/palliative-care-non-pain-management/Myths About Palliative Care
https://bit.ly/MythsAboutPalliativeCare
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
Withdrawing and withholding life-sustaining medical treatment. Currently in the UK it is recognised that where death is inevitable life-sustaining treatments such as resuscitation, artificial ventilation, dialysis or artificial feeding may be withdrawn or withheld. In such cases the goal of medicine becomes the relief of symptoms. ‘Basic care’ and comfort must be provided and can never be withheld.
https://diigo.com/0hubs7Removing life-prolonging treatments is not euthanasia It is acknowledged that sometimes giving adequate symptom control or withholding or withdrawing life-prolonging treatments may hasten a death that is already expected. This is not euthanasia.
End-of-life care (or EoLC) refers to health care for a person with a terminal condition that has become advanced, progressive, and/or incurable.
https://en.wikipedia.org/wiki/End-of-life_care
Terminal illness or end-stage disease
is a disease that cannot be cured or adequately treated and is
reasonably expected to result in death of the patient. This term is more
commonly used for progressive diseases such as cancer or advanced heart
disease than for trauma. In popular use, it indicates a disease that
will progress until death with near absolute certainty, regardless of
treatment.
https://en.wikipedia.org/wiki/Terminal_illness
Unlike
other conditions and life experiences, which only affect a certain
percentage of the world’s population, the end-of-life is a stage in the
process of living which all people will eventually face.
Tidak seperti kondisi dan pengalaman hidup lainnya, yang hanya mempengaruhi persentase tertentu dari populasi dunia, akhir kehidupan adalah tahap dalam proses kehidupan yang akhirnya akan dihadapi oleh semua orang.
Therapeutic communication is a collection of techniques that prioritize the physical, mental, and emotional well-being of patients. Nurses provide patients with support and information while maintaining a level of professional distance and objectivity. With therapeutic communication, nurses often use open-ended statements and questions, repeat information, or use silence to prompt patients to work through problems on their own.
There are a variety opens of therapeutic communication techniques nurses can incorporate into practice.
https://www.rivier.edu/academics/blog-posts/17-therapeutic-communication-techniques/Prepare your family to make decisions for you if you can’t make them at some point in the future.
Knowing what you want will ease the burden on your family of making hard decisions for you if you can’t speak for yourself.
https://bc-cpc.ca/cpc/
These guidelines are intended for inter-professional clinicians working with adults living with advanced life-limiting illness. Though these guidelines were created for adults, the symptoms may also be experienced by children with advanced illness.
https://bc-cpc.ca/cpc/
Our practical, evidence-based programs help health professionals integrate an early approach to palliative care in their routine care for seriously ill patients.
https://bc-cpc.ca/cpc/
The Liverpool Care Pathway for the Dying Patient improves the end of life. The LCP is not a one-way road to death. One in 10 patients initially cared for on the pathway come off it because they improve clinically. Doctors cannot accurately predict the future, and much of what we do in palliative care is based on clinical experience and not hard science. The key to providing good care in this setting is regular review and keeping an open mind, while trying to communicate the uncertainties to the patient's loved ones along the way. The problem is that as a profession we do not communicate with patients and their relatives about this topic well enough. I think it should be routinely discussed as part of our clinical management plans.
Life-Limiting Illness in Palliative Care
https://bit.ly/Life-LimitingIllnessPC
An Advance Health Directive is a document that states your wishes or directions regarding your future health care for various medical conditions. It comes into effect only if you are unable to make your own decisions.You may wish your directive to apply at any time when you are unable to decide for yourself, or you may want it to apply only if you are terminally ill.https://www.publications.qld.gov.au/
What is late-stage care?
In
the final stages of a terminal illness, it can become evident that in
spite of the best care, attention, and treatment, your loved one is
approaching the end of their life. At
this point, the focus usually changes to making them as comfortable as
possible in order to make the most of the time they have left.
Depending on the nature of the illness and your loved one’s
circumstances, this final stage period may last from a matter of weeks
or months to several years. During
this time, palliative care measures can help to control pain and other
symptoms, such as constipation, nausea, or shortness of breath. Hospice care can also offer emotional and spiritual support to both the patient and their family.
https://www.helpguide.org/articles/end-of-life/late-stage-and-end-of-life-care.htmGenerally speaking, palliative care offers specialized medical care for anyone living with a serious ailment, with a focus on expert symptom management, skilled communication, and support for patients and their families. It is provided at the same time as all other medical care and its aim is to provide relief from the symptoms and stresses of illness, improving quality of life for both patients and families.
Download pptx
Palliative
care shifts the focus of care from managing the underlying
pathophysiological processes to one that looks at the individual and the
impact of life-threatening illness on them and those important to them. It
aims to prevent and relieve suffering by means of early identification,
assessment, and treatment of pain and other problems, physical,
psychosocial, and spiritual. It focuses on interventions which might
improve an individual’s quality of life rather than alter the underlying
disease process, and routinely extends support to those important to
the individual both during that individual’s lifetime and into
bereavement. Challenges to the provision of effective palliative
care include prognostic uncertainty, the necessity for engaging in
difficult conversations, and the need to deal with a variety of ethical
issues.
https://oxfordmedicine.com/view/10.1093/med/9780198746690.001.0001/med-9780198746690-part-7Support for Families and Carers in Palliative Care
https://bit.ly/SupportforFamiliesPC
Key Messages
- Being able to recognise that a person is imminently dying is a crucial step to providing high quality care.
- Care of a person who is imminently dying involves both clinical and ethical considerations but is based on a thorough assessment of current symptoms and forward planning for common problems.
- Care should be based on the needs of the person and the specific clinical context of care.
- Prognostication on the basis of disease trajectory is challenging but important to patient-and family-centred care.
- Withdrawing treatment is a complex and sometimes difficult process and there are guidelines available to help clinicians in this process.
- The most common symptoms in the last two weeks to 24 hours of life are pain and shortness of breath.
Futile medical care
Futile medical care is the continued provision of medical care or treatment to a patient when there is no reasonable hope of a cure or benefit.
Some proponents of evidence-based medicine suggest discontinuing the use of any treatment that has not been shown to provide a measurable benefit.
Futile care discontinuation is distinct from euthanasia because euthanasia involves active intervention to end life, while withholding futile medical care does not encourage or hasten the natural onset of death.
https://en.wikipedia.org/wiki/Futile_medical_care
Continued anticoagulation in palliative care patients with limited life expectancy is controversial. Some patients may find daily injections both painful and inconvenient. While therapy can initially provide improvement in symptoms, it may be of limited use at the end of life. Decision to stop anticoagulation therapy must be made on an individual basis by addressing specific goals of care.
https://emedicine.medscape.com/article/270646-overview#showallhttps://diigo.com/0huf91
- "One study of patients with advanced cancer showed that in fact the prevalence of pain actually decreased from 52% about 6 weeks before death to 30% in the last week of life (Conill et al 1997). Perhaps this decrease in pain is because the dying process is one of shutting down, not escalation. Our energy decreases, our alertness decreases and we tend to rest and sleep more.
- Of course, sometimes an individual’s unique circumstances may result in increasing pain in the last weeks of life, however this would be unusual. In such situations, it is imperative that the health care team aggressively pursue comfort with all of the urgency and expertise possible."
Guidelines for the treatment and care of patients towards the end of life.
https://www.eolc.co.uk/professional/guidelines/
A GUIDE TO SYMPTOM MANAGEMENT IN PALLIATIVE CARE
WMPCP Palliative Guidelines Now available for free to everyone that needs it. You may download it
http://www.wmcares.org.uk/
Whether you bring a dying loved one home or keep vigil at the hospital, you can take measures to provide comfort and relief at the end of life.
https://www.mayoclinic.org/healthy-lifestyle/end-of-life/in-depth/cancer/art-20047600
Dying is the one certain thing in life – we
will all die. Some people unexpectedly as a result of illness or
accident, and some gradually from a chronic illness or frailty.
https://www.rcn.org.uk/clinical-topics/end-of-life-careWithin a healthcare team are three levels of palliative care provision with increasing specialisation from level 1 to level 3:
- Level 1: Provided in any location or setting by all health care professionals as part of their role and using a palliative care approach.
- Level 2: Provided in any location, using a palliative care approach by health care professionals who have additional knowledge of palliative care principles and use this as part of their role.
- Level 3: Provided by health care professionals who work solely in palliative care, and who have extensive knowledge and skills in this specialty.
Distress caused by symptoms (physical, psychosocial or spiritual)
is actively pre-empted, and when it occurs, the response is timely and
effective. This includes prompt response to needs, regularly reviewing
the effectiveness of treatment, and ensuring the person, their family
and carers have timely access to specialist palliative care at all
times. The dignity of the person is prioritised at all times through a person-centred approach to their overall care.
https://www.health.qld.gov.au/__data/assets/pdf_file/0032/697046/PCare-National-Standards-2018a.pdfStudies have defined gaps in palliative care and the care of critically ill patients in the ICU, including the following:
- Untreated pain and other symptoms
- Unmet needs for care of families and loved ones
- Inadequate communication
- Conflict resolution among clinicians, patients, and families
- Divergence of treatment goals from patients and family preferences
- Inefficient resource utilization
- Clinician “moral distress” and burnout
Principles of Palliative Care
- Palliative care incorporates the whole spectrum of care — medical, nursing, psychological, social, cultural and spiritual. A holistic approach, incorporating these wider aspects of care, is good medical practice and in palliative care it is essential.
- The principles of palliative care might simply be regarded as those of good clinical practice, whatever the patient’s illness, wherever the patient is under care, whatever his / her social status, creed, culture or education.
“Most people who have a life-threatening condition
can benefit from palliative care, whether or not they are having active
treatment. Palliative care helps with personal, social and medical
problems associated with potentially mortal illness, especially . It assists families and carers and supports pain and other distressing symptomsthem in bereavement. It uses skilled approaches from a trained team, but often involves friends, family members and the wider community. Palliative care improves wellbeing and in some instances has even been shown to extend life”.
(David Clark 18 January 2019 - http://endoflifestudies.academicblogs.co.uk/)http://endoflifestudies.academicblogs.co.uk/controversies-in-palliative-care-a-matter-of-definition/
Hydration in Palliative Care
https://bit.ly/HydrationPC
‘Palliative care’ is care for a person of any age who has a life-limiting illness.
Palliative care involves supporting and helping the person to live as comfortably and fully as possible.
- A ‘life-limiting illness’ is one that cannot be cured and may at some time result in the person dying (whether that is years, months, weeks or days away).
- Palliative care involves providing assistance at all stages of the life-limiting illness.
- It can be provided by all health care professionals, including GPs and district nurses – supported where necessary by specialist palliative care services.
- Hospices are the main providers of specialist palliative care services for people living in the community.
A comprehensive multi-professional tool
that guides and enables healthcare professionals to focus on quality
care in the last hours or days of life for the dying person, carer,
family/whanau, friends and staff members.
https://www.hospicetaranaki.org.nz/services-patient-and-carers-information/health-care-professionals/https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3241069/
- The role of palliative care at the end of life is to relieve the suffering of patients and their families by the comprehensive assessment and treatment of physical, psychosocial, and spiritual symptoms patients experience.
- As death approaches, the symptom burden of a patient may worsen and require more aggressive palliation.
- As comfort measures intensify, so does the support provided to a dying patient’s family.
- Once death has occurred, the role of palliative care focuses primarily on the support of the patient’s family and bereavement.
Palliative care is holistic, focused on the whole person and the physical, social, emotional, and spiritual issues experienced by the patient and his or her family caregivers.
Palliative care is:
Delivered: When needed, throughout a person’s life
Goal: Alleviating suffering of all kinds
Population Served: Anyone in need of specialized care due to a serious illness
Planning for end-of-life is a difficult and uncomfortable process. The earlier the planning, the better. This is true for the individual, loved ones, and the caretaker. End-of-life care includes planning financially and managing pain. Also, it involves selecting care professionals, discussing funeral wishes, and maintaining the best quality of life possible.
https://familydoctor.org/end-life-care/
Former cancer patient Thomas William “Bill” Hays had one of his dying wishes fulfilled when he witnessed the wedding of his daughter, Micaela, at his hospital bedside.
https://www.utsouthwestern.edu/ctplus/stories/2019/palliative-care.html
The American Society for Clinical Oncology (ASCO) recommends
considering the combination of palliative care with standard oncology
care early in the course of treatment for patients with metastatic
cancer and/or a high symptom burden.
Specific 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.
END-OF-LIFE INDICATORS and INSTRUMENTS/TOOLS FOR QUALITY IN PALLIATIVE CARE:
- enrollment in palliative care within 6 months of death
- enrollment in palliative care within 3 days of death
- the edmonton symptom assessment system (esas) and the palliative performance scale (ppsv2), problem checklist are the most commonly used tools.
Medications at end of life
A range of medications will need to be considered at end of life to address worsening symptoms related to breathing, pain, saliva management and anxiety. The palliative care team should be actively involved to ensure optimal end of life care (MND Australia 2011).
Dosage and modes of administration of medications should be discussed with the palliative care physician.
- ☛ opioid analgesics - reduce cough reflex, relieve dyspnoea, control pain and help to reduce fear and anxiety
- ☛ anti-cholinergics - such as hyoscine hydrobromide and glycopyrrolate reduce saliva and lung secretions
- ☛ sedatives - such as diazepam, midazolam, clonazepam and chlorpromazine reduce anxiety
- ☛ oxygen - can be used to relieve the sensation of breathlessness
- ☛ Haloperidol - for terminal restlessness
The Institute of Medicine (IOM) offers the following definitions (2015):
- Specialty palliative care:
“Palliative
care that is delivered by health care professionals who are palliative
care specialists, such as physicians who are board certified in this
specialty; palliative-certified nurses; and palliative care-certified
social workers, pharmacists, and chaplains.”
- Primary palliative care (also known as generalist palliative care):
“Palliative
care that is delivered by health care professionals who are not
palliative care specialists, such as primary care clinicians; physicians
who are diseaseoriented specialists (such as oncologists and
cardiologists); and nurses, social workers, pharmacists, chaplains, and
others who care for this population but are not certified in palliative
care.”
https://www.nationalcoalitionhpc.org/Basic palliative care “is delivered by… primary care clinicians; physicians who are disease-oriented… and nurses, social workers, pharmacists, chaplains, and others who care for this population but are not certified in palliative care."
Specialty palliative care “is delivered by health care professionals who are palliative care specialists, such as physicians who are board certified in this specialty; palliative-certified nurses; and palliative care certified social workers, pharmacists, and chaplains."
specifically:
- physicians, including advanced practice nurses and physician assistants,
- nurses,
- social workers,
- chaplain,
- pharmacists, and
- volunteers.
Additional palliative care team members can include:
- rehab professionals (physical, occupational and speech therapists),
- dietitians,
- complementary and
- alternative medicine practitioners,
- child-life specialists,
- nutritionists,
- home health aides, and
- community health workers.
- It also frequently includes the referring physician and specialist, who contribute to the care planning process.
Always, patients and families are central to the focus and activities of the interdisciplinary palliative care team.
https://csupalliativecare.instructure.com/courses/
Less appropriate referrals
Specialist Palliative Care is largely inappropriate for:
- Patients with chronic stable disease or disability with a life expectancy of several years.
- Patients with chronic pain problems not associated with progressive terminal disease.
- Competent patients who decline referral.
- Patients who are unaware of their underlying disease (unless this is a cultural preference in which case this needs to be sensitively addressed).
- Those patients whose problems are principally psychological and need specialist psychiatric referral, whether or not they have declined such help.
Patients
can stabilise following Specialist Palliative Care interventions and
may no longer require input from that service with their ongoing care
being managed by their primary palliative care provider. Discharge from
the specialist palliative care service should be planned in
collaboration with the primary team. Re-referral back to specialist
palliative care can be made at any time should the need arise.
https://baynav.bopdhb.govt.nz/
The six most prevalent models of Palliative Care, listed below:
- Integrated- Inpatient palliative care unit- Consultative palliative care- Clinic or physician practice- Home- Nursing facilities
End of Life Care Pathway
For all Diagnoses
https://lincolnshire.moderngov.co.uk/
Sleep problems are very common in people living with a terminal illness, though not everyone will be affected. Sleep problems can be distressing for people and their friends and families. There are things you can do to encourage good quality sleep.
https://www.mariecurie.org.uk/professionals/
Sleeping problems (insomnia and poor quality sleep) are common in people requiring palliative care, and often have a significant impact on quality of life.
https://www.caresearch.com.au/
Clinical trajectories for neurologic illnesses provide a framework for discussions regarding prognosis, and utilizing prognostic tools such as the Glasgow Coma Scale, the Hunt and Hess grade, the intracerebral hemorrhage score, the National Institutes of Health Stroke Scale, and the FUNC score can further refine outcome estimations in acute illnesses.
https://www.mayoclinicproceedings.org/article/S0025-6196(17)30576-1/fulltextThe 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
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.
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
All patients with active, progressive, far-advanced disease and a short life expectancy, for whom the focus of care is the relief and prevention of suffering and the quality of life, should have access to palliative carehttps://sites.google.com/view/ethical-issues-in-pc/home
DYING WITH DIGNITY
- Recognising that people are dying
- Making sure that symptoms are properly controlled
- Communicating with people, their families and each other
- Providing out of hours services
- Making sure that service delivery and organisation help people have a good death
What we mean by spirituality
For many, spirituality may connote religion, however, that definition is too limited. In palliative care, spirituality “is a dynamic and intrinsic aspect of humanity through which persons seek ultimate meaning, purpose, and transcendence, and experience relationship to self, family, others, community, society, nature, and the significant or sacred.” (Emphasis added.) This view positions spirituality as a core element of one’s humanity, whether or not one is “religious.” One can see, then, how not only acknowledging but truly supporting a patient’s spirituality–their way to make meaning and purpose in their life–is key to the person-centered approach of palliative care and an essential element in providing quality comprehensive care.
https://coalitionccc.org/2017/10/place-spiritual-guidance-palliative-care/existential
- If something is existential, it has to do with human existence. If you wrestle with big questions involving the meaning of life, you may be having an existential crisis.
- Existential can also relate to existence in a more concrete way. For instance, the objections of your mother-in-law may pose an existential threat to the continuation of your Friday night card game. Often the word carries at least a nodding reference to the philosophy of existentialism associated with Kierkegaard, Nietzsche, Sartre, and others, which emphasizes the individual as a free agent responsible for his actions.
- Relating to or dealing with existence (especially with human existence).
Derived from experience or the experience of existence: “"formal logicians are not concerned with existential matters"- John Dewey”
The common symptoms that occur in the dying patient.
1. Pain
2. Nausea and Vomiting
3. Agitation
4. Respiratory Tract Secretions
5. Breathlessness
6. Seizures
Most patients who are dying will experience one or more of these symptoms and will require medication that is administered subcutaneously either PRN or via a syringe driver. The IV or IM routes are not routinely recommended in the dying patient.
Conditions other than those stated above may also be experienced but are considered to be less common and therefore specialist advice is required e.g. Superior Vena Cava Obstruction (SVCO).
Always seek specialist advice for patients with renal impairment or renal failure.
Palliative care e-learning course for healthcare professionals in AfricaThe difference between euthanasia and palliative sedation is concisely worded by Broeckaert, who stated the following about palliative sedation: "It is a matter of dying, not killing". The main differences between the two options can therefore be summed up as follows:If practised properly, palliative sedation must be described as a normal medical procedure.
- Palliative sedation relieves suffering by lowering consciousness; euthanasia does so by terminating life.
- Continuous and deep sedation does not in itself shorten life; euthanasia expressly does. Indeed, palliative sedation may even prolong life to some extent (because it prevents exhaustion as a result of suffering).
- Continuous and deep sedation is in principle reversible; termination of life is not.
https://www.oncoline.nl/
This VUCCnet e-learning course focuses on the core principles and best practice for delivering effective palliative care in Africa. It has been developed in partnership with the African Palliative Care Association and Cardiff University. Experts in palliative care from across Africa and the UK have contributed to ensure this module is contextualised to the sub-Saharan cancer profile and resource setting.
The first module introduces you to the core principles of palliative care.
https://ecancer.org/en/elearning/
• Symptom control in patients with chronic kidney disease/ renal impairment is complicated by delayed drug clearance, dialysis effects and renal toxicity associated with commonly used medication (eg. NSAIDs).
• 50% of dialysis patients have pain. Depression and other symptoms are common.
https://web.archive.org/web/20200815173224/https://www.palliativecareggc.org.uk/wp-content/uploads/2015/08/RenalPalliativeCarefinal-mar-2011.pdf
Urinary output normally declines in the patient who is dying; 300 to 500 mL per day is adequate. The large volumes (2 to 3 L per day) that physicians associate with hospitalized patients are usually the result of intravenous infusions and do not reflect normal output with oral hydration.
https://www.aafp.org/afp/2000/1001/p1555.htmlBeliau bersabda,
خَيْرُ النَّاسِ مَنْ طَالَ عُمْرُهُ وَحَسُنَ عَمَلُهُ، وَشَرُّ النَّاسِ مَنْ طَالَ عُمْرُهُ وَسَاءَ عَمَلُهُ
“Sebaik-baik manusia adalah yang panjang umurnya dan baik amalannya, sedangkan sejelek-jelek manusia adalah yang panjang umurnya dan jelek amalannya.” (HR. Ahmad, at-Tirmidzi, dan al-Hakim, dari Abu Bakrah radhiyallahu ‘anhu. Hadits ini bisa dilihat di dalam Shahih al-Jami’ no. 3297)https://qonitah.com/upaya-mencari-kelapangan-rezeki-dan-perpanjangan-umur/
Palliative Care Perspectives from Palliative Care Specialist
• Focused on the idea of a 'good death', achieving that for the patient, and ensuring symptoms are adequately treated -a 'good death' comes in many different forms
• Important factors include supportive family, location, level of care, skilled carers, and specialist support provided at a local level
• Care is an ecosystem -patient and family right at the centre of that, everything else needs to build around that and recognise a cultural/religious/social context
• Important for an individual to be able to recognise they are approaching final 12 months, and to be empowered to have discussions, make decisions about advanced care.
https://quran.com/36/65
That Day, We will seal over their mouths, and their hands will speak to Us, and their feet will testify about what they used to earn.
(Translated by Sahih International)
The heart is not always beating,
The pulse is not always beating,
The breath is not forever being blown.
The doctor should not want to know that.
Tak selamanya jantung terdetak,
Tak selamanya nadi terdenyut,
Tak selamanya nafas terhembus.
Tak bolehlah dokter tidak mau tahu itu.
Ketika Tangan dan Kaki Berkata
Chrisye - Ketika Tangan dan Kaki Berkata (Taufik Ismail )
Akan datang hari
Mulut dikunci
Kata tak ada lgi
Akan tiba masa
Tak ada suara
Dari mulut kita
Berkata tangan kita
Tentang apa yang dilakukannya
Berkata kaki kita
Kemana saja dia melangkahnya
Tidak tahu kita
Bila harinya
Tanggung jawab, tiba
Rabbana
Tangan kami
Kaki kami
Mulut kami
Mata hati kami
Luruskanlah
Kukuhkanlah
Di jalan cahaya
Sempurna
Mohon karunia
Kepada kami
HambaMu
Yang hina
"Jangan rugikan dirimu karena bila ternyata hidupmu tidak berpahala".
Okay kan?
