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The goal of palliative care is to maintain the quality of life while neither hastening nor postponing death
☛ death is the natural end of life ☛ there is no ethic, in any culture or religion, which say that a terminally ill patient must be kept alive by any means ☛ what matters is the quality of life left to the patient, not the time which is left to them ☛ palliative care must never become an exercise in prolonging life
Whether it is appropriate to offer or to withhold or withdraw a particular therapy depends on the balance between the possible benefits and the potential risks of the treatment, i.e. what is in the patient’s best interests
☛ it will depend on individual clinical circumstances ☛ it is often difficult and complex ☛ futile therapy, with no chance of benefit (“You have to do something!”), can never be justified
Example 1 Should a terminally patient receive antibiotics for chest infection?
☛ depends on many factors, including
o the patient’s nearness to death o the wishes of the patient and their family o the expected benefits from the patient’s point of view
☛ if the antibiotics
o will merely prolong the dying process, they are probably best withheld o will control distressing symptoms unresponsive to other measures, such as pyrexia or delirium, they may be of benefit
Example 2 How should renal failure caused by ureteric obstruction due to advanced cancer be managed?
☛ if the patient was terminally ill because of cancer before renal failure supervened, active therapy is probably inappropriate ☛ if the patient was previously relatively well and has a reasonable life expectancy except for the effects of renal failure, consideration for stenting or nephrostomy insertion is appropriate
Patients have a right to an honest and full explanation of their situation
☛ patients should be told as much or as little as they wantto know
- patients have a right to decline information if they so wish. (There often comes a time in palliative care when a patient will say that they trust their professional carers and do not want more information or having to make difficult decisions).
☛ without information about the disease and prognosis, patients
- cannot participate in their own treatment planning
- cannot give informed consent to treatment
- cannot make suitable plans for themselves and their families
Communication should be with the patient, unless
☛ the patient is not competent ☛ they have delegated the responsibility to a family member, something that should be confirmed or documented as a Power of Attorney. ☛ religious or cultural custom requires that the male head of the family is told
Communication about sensitive matters should be
☛ carried out in an understanding, sensitive and unhurried manner ☛ given in a way that can be understood ☛ performed honestly
see Communication with Patients
Telling patients nothing or lying to them is very likely to cause harm
☛ there is evidence from many different countries and cultures that terminally ill patients fear the unknown more than they fear the known and will suffer less, both physically and psychologically, when given the information they want ☛ even in countries where patients are traditionally not told the diagnosis and are thought not to know it, many patients have a good idea of the diagnosis and its prognosis even if they have not been explicitly informed about it ☛ will lead to loss of trust when the patient is informed of, or deduces the true situation
Ethics are the principles that should guide doctors and other health care professionals in their work and decision-making
☛ they are not laws but guiding principles; some things may be legal but are not ethical. ☛ they apply to all medical care but assume greater importance when caring for people at the end of life. ☛ unlike cultural issues that differ from country to country, the same ethical principles apply everywhere.
There are four main principles of medical ethics Beneficence — is to produce benefit, to do good, to always act in the best interests of the patient
☛ whatever is done or said must be for the patient’s good ☛ includes being honest with patients, which in nearly all circumstances will be of benefit to the patients ☛ patients should not be subjected to unnecessary investigations ☛ patients should not be subjected to unnecessary or futile therapies ☛ applies not only to physical good but also to psychological, social and existential well-being ☛ must be distinguished from paternalism (‘doctor knows best’)
Non-maleficence — is to minimise or do no harm
☛ whatever is done or said must not harm the patient, physically or psychologically ☛ includes being honest with patients; lying to patients or telling only part of the truth will very probably cause harm ☛ for every intervention, the potential benefits must be weighed against possible adverse effects ☛ treatments should not be prescribed unless there is a strong chance they will help the patient and only a small chance of unpleasant adverse effects. In palliative care, there is no place for the prescription of placebo.!prescribing should aim to produce the minimum of adverse effects.
Autonomy — acknowledges patients’ rights to self-determination, without prejudice
☛ treatments can only be given with patients’ informed consent ☛ it is the patients’ right to decide what treatments they do or do not wish to have ☛ patients have a right to be fully informed in order to make decisions. ☛ heath care professionals have an obligation to provide honest and complete information when it is requested. Opportunities must be given for them to ask questions and show that they understand what is being suggested to them ☛ applies not only to medical treatments but also to matters such as where they receive care, and who shall provide their care
Justice — refers to the equitable allocation of health care resources according to need
☛ not according to wealth, class, creed or colour ☛ unfortunately, observation of health care around the world shows much lack of justice ☛ many treatments are only available to the rich, or those with influence and power, or those articulate enough to ask for something better ☛ in some countries morphine is available only if the patient can afford it ☛ in some countries even palliative care has to be paid for and lack of money may mean dying in pain, possibly alone, without any dignity
In Clinical Practice
☛ situations arise where there is apparent conflict between different principles ☛ in assessing which principle is the more important
- give priority to what is in the best interests of the individual patient
- weigh the possible benefits against the potential adverse effects for each proposed therapy
Many patients with advanced disease do not receive palliative care and some are referred too late in the course of their disease to benefit from treatment.
The reasons for this may relate to the physician, the patient, the family, or to societal factors. Barriers related to the physician ☛ poor prognostication: does not recognise how advanced the patient’s illness is ☛ may not recognise how much the patient is suffering ☛ lacks communication skills to address end-of-life issues ☛ believe they are already providing good palliative care and need no assistance ☛ misunderstands what a palliative care service does or has to offer ☛ does not want to hand over the patient’s care: loss of control, loss of income ☛ opiophobia: worries the patient may become addicted to opioids or suffer severe side effects ☛ does not believe in palliative care ☛ does not know of the palliative care service
Barriers related to the relatives ☛ they may never have heard of palliative care or a local service ☛ they may not know whom to ask about it ☛ they may worry if they can afford it ☛ they may fear what relatives and neighbours will say about home care ☛ they may not want many professionals visiting the home ☛ there may be patient-family disagreement about treatment options ☛ they may feel unskilled and unable to care for their loved one at home ☛ they may want the patient to stay at home or the hospital ward they are currently in ☛ they may fear unexpected emergencies at home and not know if the palliative care service can cope with them ☛ they may fear it may mean telling the patient they are dying (which may have been previously resisted) ☛ they may think it is euthanasia by another name Barriers related to the patient ☛ they may have unrealistic expectations about their disease and prognosis ☛ there may have been no advance care planning/discussions ☛ they may not have heard of hospice or palliative care ☛ they may suspect that it is dismal, gloomy and frightening with people dying all around you and everyone talking about death ☛ they may suspect that people die as a result of euthanasia ☛ they may worry about opioid addiction ☛ they may not want to leave home or the unit they are currently in ☛ they may not want to have to develop relationships with new professionals Barriers related to society and culture ☛ ethnic minorities ☛ language barriers ☛ poor or underprivileged ☛ rural communities ☛ dying and death still remain, to a large extent, taboo subjects ☛ there is still a deeply held view that maintaining life—whatever its quality—is a prime responsibility of health care professionals and services. ☛ opiophobia
Many health care workers believe that palliative care is the "soft option" adopted when "active" therapy stops
→ palliative care, addressing all the patient’s physical and psychosocial problems, is active therapy
Palliative care has in the past been regarded as the care employed when all avenues of treatment for the underlying disease are exhausted and further active medical treatment considered inappropriate.
Palliative care should be initiated when a patient becomes symptomatic of active, progressive, incurable disease
→ it should never be withheld until such time as all modalities of treatment of the underlying disease have been exhausted
→ it is active therapy that is complementary to active treatment of the underlying disease
→ It should be integrated in a seamless manner with other aspects of care
→ a holistic approach to care, encompassing all aspects of a patient’s suffering and which is a prerequisite for successful palliative care, is often lacking in modern disease-orientated medicine.
[Diagrams reproduced with permission from Woodruff R. Palliative Medicine. 4th edition. Oxford University Press, 2004]
→ there is no one right or wrong model for the provision of palliative care
→ the best model is determined by local needs and resources, in consultation with the local health care providers and authorities
→ IAHPC believes that each developing country should be encouraged and enabled to develop its own model of palliative care, appropriate to the needs of the local patients and the available resources, taking advantage of the experience and expertise accumulated in developed countries, and not be expected to copy models more appropriate to affluent countries
Types of Care: the meaning of "Palliative"
It is important to differentiate
→ palliative care principles which apply to all care, whatever the disease suffered by a patient
→ palliative techniques or therapies include medical and surgical therapies (e.g. stenting, paracentesis, internal fixation of fractures and radiotherapy) that are employed to palliate symptoms and ease suffering but are only a small part of the spectrum of care known as palliative care
→ specialist palliative care in some countries is practised in units operated exclusively for palliative care by doctors and nurses who are accredited specialists in palliative care. Whether such specialisation is important or essential is something that can only be debated in the context of national needs and resources.
Models of Care
Palliative Care Services operate in one or more of the following ways, reflecting local practice and needs, but there is no "right" or "wrong" type of service.
In-patient beds
→ an in-patient palliative care unit may be part of a hospital or an independent free-standing unit
☛ a hospital unit may be either a special ward within the hospital or a separate unit built in the hospital grounds
☛ a free-standing unit is physically separate from the hospital, but should still be able to access its staff and services
→ patients may be admitted for
☛ symptom management (physical or psychosocial)
☛ terminal care
☛ short duration rehabilitation/convalescence
☛ to provide a period of respite for family carers
→ in the UK, most units have few beds (6-30), an average length of stay of 2 weeks or less, and a discharge rate of 40-60%
☛ these figures vary greatly around the world and depend on local needs and resources, and the relationship to other services
Community services
→ there are various models for community based palliative care services
☛ services providing specialist advice and support for the family doctors and community nurses managing the patients
☛ services providing "hands-on" nursing and allied health services to patients at home, in co-operation with the patient’s own doctor
☛ comprehensive services providing medical, nursing and allied health care to patients and their families at home
Day Units
→ known as Day Care, Day Hospice, Day Palliative Care Unit
→ usually form part of a hospital or in-patient palliative care unit
→ provide care, rehabilitation, support and respite during the day for people under care at home, who are still well enough to be transported to and from the Day Care Unit, often by volunteer transport
Hospital Palliative Care Teams
→ operate in general and specialist hospitals
→ are staffed by doctors and palliative care nurses
☛ some also have a social worker or a pastoral care specialist
→ provide consultative advice on patients referred to them in any department of the hospital
☛ to advise on every aspect of palliation
☛ provide support for family member
☛ provide support and education for the staff
→ facilitates the provision of high quality palliative care in all wards
☛ where the patient is familiar with the staff and surroundings
☛ without the need to be transferred to another unit
☛ educates the ward staff about matters pertaining to palliative care
Advance care planning is a means for patients to record their end-of-life values and preferences, including their wishes regarding future treatments (or avoidance of them)
Advance care planning involves a number of processes
→ informing the patient
→ eliciting preferences
→ identifying a surrogate decision maker to act if the patient is no longer able to make decisions about their own care
→ it involves discussions with family members, or at least with the person who is to be the surrogate decision maker
The principle of advance care planning is not new
→ it is common for patients aware of approaching death to discuss with their carers how they wish to be treated
→ however, these wishes have not always been respected, especially
☛ if the patient is urgently taken to hospital
☛ if there is disagreement amongst family members about what is appropriate treatment
The "Respecting Choices" program developed in Wisconsin is an example of advance care planning
→ employs trained personnel to facilitate the discussions and record the outcomes, which are in writing and signed, and kept in the front of the patient’s file
→ the surrogate decision maker is involved in the discussions so that they have explicit knowledge of the patient’s wishes; otherwise they may feel burdened by the responsibility
→ there is less conflict between patients and their families if advance care planning has been discussed
Important and potentially difficult discussions are frequently necessary with palliative care patients who have active, progressive, far-advanced disease, regarding
→ breaking bad news
→ further treatment directed at the underlying disease
→ communicating prognoses
→ admission to a palliative care program
→ artificial nutrition
→ artificial hydration
→ medications such as antibiotics
→ do-not-resuscitate orders
Decisions must be individualized for each patient and should be made in discussion with the patient and family. The following guide is to help you plan for and hold such discussions.
BEFORE THE DISCUSSION
Ask yourself these questions
Would you be surprised if this patient died of their disease within 6 months?
→ This may provide a better guide for decision-making, as attempting to prognosticate may be difficult and inaccurate.
☛ Alternatively, assess how much the patient’s condition has deteriorated in the last month or six weeks, using observations by the team and objective measures such as x-rays and biochemistry.
Observations by close relatives often help.
What specific therapies are available to treat the underlying disease?
→ What are the percentage chances of significant clinical improvement?
→ Does that take into account the patient’s age and any other diseases/comorbidities?
→ How long would the improvement last? Days, weeks or months?
→ What are the percentage chances of serious adverse effects? __%
→ Does that take into account the patient’s age and any other diseases/comorbidities?
→ On balance, do the potential benefits outweigh the potential burdens?
About the Patient and Family
→ What is their understanding of the state of the disease and the prognosis?
→ Do they understand the goal of any treatments to be discussed (i.e. palliative, not curative)?
→ Do they understand the potential benefits and burdens of the treatment options?
→ What are their expectations? What are they hoping for?
→ What do you think their preferences are?
THE DISCUSSION
Appropriate setting
→ Discussions should be held in person and not by telephone, except when face-to-face meetings are not possible for geographic reasons
→ Privacy, prevent interruptions (leave your pager/mobile with someone else)
→ Sitting down so the patient and relative can see your face, not standing over the patient’s bed
→ Allow enough time
→ The patient has at least one family member or friend for support
Introduce the discussion
→ e.g. We need to talk about your current problems and our goals for your care
Find out what they understand
→ e.g. Tell me what you understand about your illness at the moment
Find out what they expect
→ e.g. Tell me what you see happening with this illness in the future
→ e.g. Tell me what things are important for you
Provide medical information, if necessary
→ in a caring and sympathetic way, not abruptly or bluntly
→ in a way they can understand
→ clearly (avoid euphemisms and medical jargon)
→ the medical situation
→ what treatments can be offered
→ the possible benefits and adverse effects of any treatments
→ as much or as little information as they want (if unsure, ask them how much they want)
→ use trained interpreters
Discuss realistic possibilities in the context of their view of the present and future
→ Discussing further active treatment for the underlying disease
☛ truthful discussion of what therapy is or is not available
☛ the benefits and burdens of any therapies
☛ NEVER say "there is nothing more that can be done"
☀ patients interpret this to mean no treatment for anything
☀ it is never true
☀ patients and families will feel abandoned
☛ patients may be told there is no further therapy for the underlying disease, but the provision of continuing care and symptom control should be stressed
☛ if further active therapy for the underlying disease is not appropriate, emphasize the positive aspects of symptomatic and supportive palliative care
→ Discussing prognoses
☛ Explain the uncertainty in estimating an individual patient’s prognosis
☛ Avoid precise prognostication
☛ Give a realistic time range
☛ Provide realistic hope—helping them achieve what is important to them
☛ Recommend that family relationships and worldly affairs be attended to
☛ Be prepared to answer questions about the process of dying.
Remember, most people are more afraid of dying than of death itself.
☛ Provide on-going support and counselling
☛ Reassure about continuity of care
→ Discussing admission to palliative care
☛ discuss palliative care in the context of how it can help them achieve their goals
☀ e.g. You have told me you would like to…… Palliative care may be able to help you achieve what you want
☛ emphasize the positive aspects of palliative care
☀ e.g. living as well as possible, for as long as possible; not "giving up"
→ Discussing appropriate medical care
☛ Issues related to the appropriateness of artificial hydration and nutrition, antibiotics and other medications are dealt with in the section on Ethical Issues
☛ Explain the possible benefits and burdens (or futility) of any intervention
☛ If agreement is not reached, the intervention can be trialled for a specified time
→ Discussing "Do-not-resuscitate" orders (DNR)
☛ Introduce the discussion
☀ e.g. We need to discuss something we discuss with all patients admitted to the hospital
☛ Find out what the patient understands
☀ e.g. What do you understand about your current medical problems?
☛ Find out what the patient expects, what their goals are
☀ e.g. What do you see happening in the future?
☛ Discuss a DNR order in the context of the patient’s view of their future
☀ e.g. You have told me you would like……so CPR would not seem appropriate if you died
☛ If necessary, discuss
☀ futility of CPR (chances of surviving to discharge)
☀ indignity of CPR
☀ being on a respirator in ICU and unable to communicate
☛ Respond sympathetically to emotional reactions
☛ Reassure patient that all other medical care will continue
☛ If a patient clearly understands that they are dying and that the only care that they will receive is directed to their comfort, it may not be necessary to discuss DNR orders. If this is the case, it must be recorded in case-notes.
Respond sympathetically to emotional reactions
Agree on a plan, with provision that it can be modified if circumstances change
Remember, death is the natural end to life and is not a failure of medicine
→ 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 medical practice
Principles of palliative care
→ Attitude to Care
☛ Caring attitude
☛ Commitment
☛ Consideration of individuality
☛ Cultural considerations
☛ Consent
☛ Choice of site of care
→ Communication
☛ Communication amongst health care professionals
☛ Communication with patients and families
→ The Care
☛ Clinical context: appropriate treatment
☛ Comprehensive and multidisciplinary
☛ Care excellence
☛ Consistent
☛ Co-ordinated
☛ Continuity
☛ Crisis prevention
☛ Caregiver support
☛ Continued reassessment
→ Advance Care Planning
Caring attitude
→ involves sensitivity, empathy and compassion, and demonstrates concern for the individual
→ there is concern for all aspects of a patient’s suffering, not just the medical problems
→ there is a non-judgmental approach in which personality, intellect, ethnic origin, religious belief or any other individual factors do not prejudice the delivery of optimal care
Consideration of individuality
→ the practice of categorizing patients by their underlying disease, based on the similarity of the medical problems encountered, fails to recognize the psychosocial features and problems that make every patient a unique individual
→ these unique characteristics can greatly influence suffering and need to be taken into account when planning the palliative care for individual patients
Cultural considerations
→ ethnic, racial, religious and other cultural factors may have a profound effect on a patient’s suffering
→ cultural differences are to be respected and treatment planned in a culturally sensitive manner
Consent
→ the consent of a patient, or those to whom the responsibility is delegated, is necessary before any treatment is given or withdrawn
→ the majority of patients want shared decision making although physicians tend to underestimate this
→ having assessed what treatment is appropriate or inappropriate, this is discussed with the patient
→ in most instances, adequately informed patients will accept the recommendations made
Choice of site of care
→ the patient and family need to be included in any discussion about the site of care
→ patients with a terminal illness should be managed at home whenever possible
Communication
→ good communication between all the health care professionals involved in a patient’s care is essential and is fundamental to many aspects of palliative care
→ good communication with patients and families is also essential
see Communication
Clinical context: Appropriate treatment
→ all palliative treatment should be appropriate to the stage of the patient’s disease and the prognosis
→ over-enthusiastic therapy that is inappropriate and patient neglect are equally deplorable
→ palliative care has been accused of the medicalization of death, and care must be taken to balance technical interventions with a humanistic orientation to dying patients
→ the prescription of appropriate treatment is particularly important in palliative care because of the unnecessary additional suffering that may be caused by inappropriately active therapy or by lack of treatment
→ when palliative care includes active therapy for the underlying disease, limits should be observed, appropriate to the patient’s condition and prognosis and the patient’s expressed wishes
→ treatment known to be futile, given because "you have to do something", is unethical
→ where only symptomatic and supportive palliative measures are employed, all efforts are directed at the relief of suffering and the quality of life, and not necessarily at the prolongation of life
see Ethical issues
Comprehensive interprofessional care
→ the provision of total or comprehensive care for all aspects of a patient’s suffering requires an interdisciplinary team
Care excellence
→ palliative care should deliver the best possible medical, nursing and allied health care that is available and appropriate
Consistent medical care
→ consistent medical management requires that an overall plan of care be established, and regularly reviewed, for each patient
→ this will reduce the likelihood of sudden or unexpected alterations, which can be distressing for the patient and family
Coordinated care
→ involves the effective organization of the work of the members of the interprofessional team, to provide maximal support and care to the patient and family
→ care planning meetings, to which all members of the team can contribute, and at which the views of the patient and the family are presented, are used to develop a plan of care for each individual patient
Continuity of care
→ the provision of continuous symptomatic and supportive care from the time the patient is first referred until death is basic to the aims of palliative care
→ problems most frequently arise when patients are moved from one place of care to another and ensuring continuity of all aspects of care is most important
Crisis prevention
→ good palliative care involves careful planning to prevent the physical and emotional crises that occur with progressive disease
→ many of the clinical problems can be anticipated and some can be prevented by appropriate management
→ patients and their families should be forewarned of likely problems, and contingency plans made to minimize physical and emotional distress
Caregiver support
→ the relatives of patients with advanced disease are subject to considerable emotional and physical distress, especially if the patient is being managed at home
→ particular attention must be paid to their needs as the success or failure of palliative care may depend on the caregivers’ ability to cope
Continued reassessment
→ is a necessity for all patients with advanced disease for whom increasing and new clinical problems are to be expected
→ this applies as much to psychosocial issues as it does to pain and other physical symptoms
Successful palliative care requires attention to all aspects of a patient’s suffering, which requires input or assistance from a range of medical, nursing and allied health personnel—a multidisciplinary approach.
Established palliative care services work as a multidisciplinary or interprofessional team
→ multidisciplinary is the term that used to be applied to palliative care teams, but if the individuals work independently and there are no regular team meetings, patient care may become fragmented and conflicting information given to patients and families
→ interprofessional is the term now used for teams that meet on a regular basis to discuss patient care and develop a unified plan of management for each patient, and provide support for other members of the team
→ where palliative care services have not yet been established, it is important for the few professionals providing such care to work as a team, meeting regularly, planning and reviewing care, and supporting each other
The patient may be considered a "member" of the team (although they do not participate in team meetings), as all treatment must be with their consent and in accordance with their wishes
The members of the patient’s family can be considered "members", as they have an important role in the patient’s overall care and their opinions should be included when formulating a plan of management
Volunteers play an important role in many palliative care services
Suffering may be defined as the distress associated with events that threaten the intactness or wholeness of the person.
In clinical practice, it is helpful to have a simple classification of the causes of suffering, so that the complex problems presented by patients can be disentangled, in order to provide comprehensive palliation and relief of suffering:
→ Pain
→ Other physical symptoms
→ Psychological
→ Social
→ Cultural
→ Spiritual
The components of palliative care, or the aspects of care and treatment that need to be addressed, follow logically from the causes of suffering. Each has to be addressed in the provision of comprehensive palliative care, making a multidisciplinary approach to care a necessity.
Treatment of pain and physical symptoms are addressed first because it is not possible to deal with the psychosocial aspects of care if the patient has unrelieved pain or other distressing physical symptoms.
The various causes of suffering are interdependent and unrecognized or unresolved problems relating to one cause may cause or exacerbate other aspects of suffering
→ unrelieved pain can cause or aggravate psychosocial problems
☛ these psychosocial components of suffering will not be treated successfully until the pain is relieved
→ pain may be aggravated by unrecognized or untreated psychosocial problems
☛ no amount of well prescribed analgesia will relieve the patient’s pain until the psychosocial problems are addressed
→ A multidisciplinary approach to assessment and treatment is mandatory
☛ failure to do this often results in unrelieved pain and unrelieved psychosocial suffering
☛ no one individual can deal with the many problems encountered in palliative care and an integrated team is essential.
For patients with active, progressive, far-advanced disease, the goals of palliative care are → to provide relief from pain and other physical symptoms → to maximize the quality of life → to provide psychosocial and spiritual care → to support the family during the patient’s illness and bereavement
→ it is estimated that tens of millions of people die with unrelieved suffering
→ about five million people die of cancer each year, to which can be added the numbers of patients dying with AIDS and other diseases who might benefit from palliative care
→ that many people die with unnecessary or untreated suffering has been well documented in many studies and published in hundreds of scientific papers and reports
→ in developed and developing countries alike, people are living and dying
☛ in unrelieved pain
☛ with uncontrolled physical symptoms
☛ with unresolved psychosocial and spiritual problems
☛ in fear and loneliness
→ this is the suffering that could be helped or prevented with palliative care
→ the World Health Organization (1990) and the Barcelona (1996)
Declarations both called for palliative care to be included in every country’s health services
→ the relief of suffering is an ethical imperative
☛ every patient with an active, progressive, far-advanced illness has a right to palliative care
☛ every doctor and nurse has a responsibility to employ the principles of palliative care in the care of these patients
→ hospice means different things in different countries—it is variously used to refer to a philosophy of care, to the buildings where it is practised, to care offered by unpaid volunteers, or to care in the final days of life
→ it is better to adopt and use the term palliative care
Should a Palliative Care service provide care for patients with chronic diseases?
No, although their care is important.
→ patients with chronic conditions such as rheumatoid arthritis, degenerative diseases, diabetes mellitus and similar conditions usually do not have active, progressive, far-advanced disease
→ nevertheless, many of the principles of palliative care are appropriate to the management of patients with chronic diseases
Should a Palliative Care service provide care for patients with incurable diseases?
No, although their care is important.
→ as with patients with chronic diseases, these patients usually do not have active, progressive, far-advanced disease
→ nevertheless, many of the principles of palliative care are appropriate to the management of patients with incurable diseases
Should a Palliative Care service provide care for patients incapacitated by their disease?
No, although their care is important.
→ patients incapacitated by psychiatric illness, cerebrovascular accidents, trauma, dementia and the like deserve special care but they usually do not have active, progressive, far-advanced disease
→ nevertheless, many of the principles of palliative care are appropriate to the management of patients incapacitated by their disease
Should a Palliative Care service provide care for the elderly?
No, although their care is important.
→ many patients needing palliative care are elderly but they need palliative care because of the underlying disease from which they are suffering, not because of their age
→ nevertheless, many of the principles of palliative care are appropriate to the management of the elderly
Is Palliative Care just Terminal Care or Care of the Dying?
No.
→ the provision of high quality care during the final days and hours of life is an important part of palliative care
→ palliative care should be initiated when the patient becomes symptomatic of their active, progressive, far-advanced disease and should never be withheld until such time as all treatment alternatives for the underlying disease have been exhausted
Should Palliative Care stay separate from mainstream medicine?
No.
→ palliative care originated because of the belief that terminally ill patients were not receiving optimal care and there was for a long time mutual distrust between the practitioners of palliative care and orthodox medicine
→ modern palliative care should be integrated into mainstream medicine
→ it provides active and holistic care that is complementary to the active treatment of the underlying disease
→ it will foster palliative care skills for other health care professionals, particularly better pain and symptom control and appreciation of the psychosocial aspects of care
Is Palliative Care not just "old-fashioned" care?
No.
→ palliative care was originally separate from mainstream medicine, and was frequently practised by very caring individuals who knew little about medicine
→ modern palliative care is more integrated with other health care systems and calls for highly trained doctors and nurses, competent in a range of medical disciplines including internal medicine, pharmacology, communications skills, oncology and psychotherapy
Is Palliative Care what you do when "nothing more can be done"?
No.
→ no patient should ever be told "there is nothing more that can be done"—it is never true and may be seen as abandonment of care
→ it may be permissible to say there is no treatment available to stop the progression of the underlying disease, but it is always possible to provide care and good symptom control
Does Palliative Care include euthanasia and physician-assisted suicide?
No.
→ a request for euthanasia or assisted suicide is usually a plea for better care
→ depression and psychosocial problems are frequent in patients making requests
→ unrelieved or intolerable physical or psychosocial suffering should be infrequent if patients have access to modern interprofessional palliative care
→ terminally ill patients suffering intractable symptoms can be treated by sedation; this does not constitute euthanasia or physician-assisted suicide
Is a Palliative Care service really a pain service and its doctors pain specialists?
No.
→ Most but not all patients needing palliative care have pain of one sort of another but there are usually many other reasons for their distress. Focusing on pain to the exclusion of the others does not help the patient.
→ Palliative medicine doctors have all had advanced training in pain management but not necessarily in invasive measures (though these are less frequently used in modern palliative care.). Their training has embraced all aspects of suffering – physical, psychosocial and spiritual –but their certification is in palliative medicine, not chronic pain management.
Palliative care is the care of patients with active, progressive, far-advanced disease, for whom the focus of care is the relief and prevention of suffering and the quality of life. The following should be noted
→ active disease: this activity can be confirmed and measured objectively by clinical examination and investigations
→ progressive disease: this too can be assessed clinically
→ far-advanced disease: more difficult to define but examples are
o extensive metastatic disease in cancer
o refractory cardiac failure
o total dependency in neurodegenerative conditions or Alzheimer’s disease
→ focus on the quality of life is the key feature of the definition
→ it is person-oriented, not disease-oriented
→ it is not primarily concerned with life prolongation (nor with life shortening)
→ it is not primarily concerned with producing long term disease remission
→ it is holistic in approach and aims to address all the patient’s problems, both physical and psychosocial
→ it uses a multidisciplinary or interprofessional approach involving doctors, nurses and allied health personnel to cover all aspects of care
→ it is dedicated to the quality of whatever life remains for the patient
→ palliative care is appropriate for all patients with active, progressive, faradvanced disease and not just patients with cancer
→ palliative care is appropriate for patients receiving continuing therapy for their underlying disease
→ palliative care should never be withheld until such time that all treatment alternatives for the underlying disease have been exhausted
The message of palliative care is that whatever the disease, however advanced it is, whatever treatments have already been given, there is always something which can be done to improve the quality of the life remaining to the patient.
WORLD HEALTH ORGANIZATION DEFINITION
Palliative care is an approach that improves the quality of life of patients and their families facing the problems associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual.
Palliative care
→ Provides relief from pain and other distressing symptoms
→ Affirms life and regards dying as a normal process
→ Intends neither to hasten nor postpone death
→ Integrates the psychological and spiritual aspects of patient care
→ Offers a support system to help patients live as actively as possible until death
→ Offers a support system to help the family cope during the patient’s illness and in their own bereavement
→ Uses a team approach to address the needs of patients and their families, including bereavement counselling, if indicated
→ Will enhance quality of life, and may also positively influence the course of illness
→ Is applicable early in the course of illness, in conjunction with other therapies that are intended to prolong life, such as chemotherapy or radiation therapy, and includes those investigations needed to better understand and manage distressing clinical complications
Palliative Care Definition - International Association for Hospice & Palliative Care
Palliative Care Definition
Palliative care is the active holistic care of individuals across all ages with serious health-related suffering due to severe illness, and especially of those near the end of life. It aims to improve the quality of life of patients, their families and their caregivers.
Palliative care:
Includes, prevention, early identification, comprehensive assessment and management of physical issues, including pain and other distressing symptoms, psychological distress, spiritual distress and social needs. Whenever possible, these interventions must be evidence based.
Provides support to help patients live as fully as possible until death by facilitating effective communication, helping them and their families determine goals of care.
Is applicable throughout the course of an illness, according to the patient’s needs.
Is provided in conjunction with disease modifying therapies whenever needed.
May positively influence the course of illness.
Intends neither to hasten nor postpone death, affirms life, and recognizes dying as a natural process.
Provides support to the family and the caregivers during the patient’s illness, and in their own bereavement.
Is delivered recognizing and respecting the cultural values and beliefs of the patient and the family.
Is applicable throughout all health care settings (place of residence and institutions) and in all levels (primary to tertiary).
Can be provided by professionals with basic palliative care training.
Requires specialist palliative care with a multiprofessional team for referral of complex cases.
To achieve palliative care integration, governments should:
Adopt adequate policies and norms that include palliative care in health laws, national health programs and national health budgets;
Ensure that insurance plans integrate palliative care as a component of programs;
Ensure access to essential medicines and technologies for pain relief and palliative care, including pediatric formulations;
Ensure that palliative care is part of all health services (from community health-based programs to hospitals), that everyone is assessed, and that all staff can provide basic palliative care with specialist teams available for referral and consultation;
Ensure access to adequate palliative care for vulnerable groups, including children and older persons;
Engage with universities, academia and teaching hospitals to include palliative care research as well as palliative care training as an integral component of ongoing education, including basic, intermediate, specialist, and continuing education.
i Suffering is health-related when it is associated with illness or injury of any kind. Health related suffering is serious when it cannot be relieved without professional intervention and when it compromises physical, social, spiritual and/or emotional functioning. Available inhttp://pallipedia.org/serious-health-related-suffering-shs/
ii Severe illness is any acute or chronic illness and/or health condition that carries a high risk of mortality, negatively impacts quality of life and daily function, and/or is burdensome in symptoms, treatments, or caregiver stress. Available athttps://pallipedia.org/severe-illness/
Kalau blog CATATAN ini favourite bagimu, ... Semoga Allah swt menuntunmu pada jalan menuju ke Surga-Nya, (yang luasnya seluas LANGIT dan BUMI-Nya).
~aku bukan yang sempurna~
PALLIATIVE, END OF LIFE AND BEREAVEMENT CARE
Perawatan paliatif adalah perawatan yang berpusat pada pasien dan keluarga yang mengoptimalkan kualitas hidup dengan mengantisipasi, mencegah, dan mengobati penderitaan ketika terapi "kuratif" sia-sia.
Dame Cicely Saunders founded St Christopher’s Hospice, in South London, in 1967, and it quickly became a source of inspiration to others. As the first “modern” hospice, it sought to combine three key principles: excellent clinical care, education, and research.
The work of Elizabeth Kübler-Ross in challenging the medical profession to change its view of dying patients brought about great change and advanced many important concepts such as living wills, home health care, and helping patients to die with dignity and respect. The “five psychological stages of dying” (denial, anger, bargaining, depression and finally acceptance) outlined in her book became accepted as common knowledge throughout the world.
Just as it is difficult to think of the modern hospice movement without reference to Dame Cicely Saunders, so it is impossible to think of the Canadian hospice movement without mention of Dr. Balfour Mount. Dr. Mount, a physician who has survived two personal bouts with cancer, took his end-of-life care training with Dame Saunders in England before becoming the founding director of the Royal Victoria Hospital Palliative Care service in 1974. In fact, he created the use of the term “palliative care” in searching for an appropriate bilingual term after discovering that the word “hospice” in French was used to describe nursing homes in France.
As hospice and palliative care continues to evolve, the hope remains that the benefits of a model of care previously available to just a few people at the end of life will, in time, be extended to all who need it - regardless of diagnosis, stage of disease, social situation or means.
Palliative care is an
approach that improves the quality of life of patients and their families
facing the problems associated with life-threatening illness, through the
prevention and relief of suffering by means of early identification and
impeccable assessment and treatment of pain and other problems, physical,
psychosocial and spiritual. https://palliativecareindonesia.blogspot.com/p/blog-page_18.html
PALLIATIVE CARE
Palliative care is a crucial part
of integrated, people-centred health services
(IPCHS).
Nothing is more people-centred
than relieving their suffering,
be it physical, psychological, social, or
spiritual.
Thus,
whether the cause of suffering is
cancer
or major organ failure,
drug-resistant tuberculosis
or severe burns,
end-stage chronic illness
or acute trauma,
extreme birth prematurity
or extreme frailty of old age,
palliative care may be needed
and integrated at all levels of care.
The 2030 Agenda slogan
‘Leave no-one behind’
means that governments trying
to achieve Sustainable Development Goal 3 must
develop palliative care policies
to cover the 40 million persons
(a total that includes at least 20 million
carers)
Palliative Care is the active holistic care of individuals across all ages with SHS (serious health-related suffering) because of severe illness and especially of those near the end of life.
It aims to improve the quality of life of patients, their families, and their caregivers.
Sufferingis health related when it is associated with illness or injury of any kind.
Health-related suffering is serious when it cannot be relieved without medical intervention and when it compromises physical, social, spiritual, and/or emotional functioning.
Severe illness is a condition that carries a high risk of mortality, negatively impacts quality of life and daily function, and/or is burdensome in symptoms, treatments, or caregiver stress.
The holistic approach looks at problems in four groups:
■ Physical – symptoms (complaints), eg pain, cough, tiredness, fever
■ Psychological – worries, fears, sadness, anger
■ Social – needs of the family, issues of food, work, housing and relationships
■ Spiritual – questions of the meaning of life and death, the need to be at peace. https://thewhpca.org/resources/palliative-care-toolkit
Palliative care:
Provides relief from pain and other distressing symptoms
Affirms life and regards dying as a normal process
Intends neither to hasten nor postpone death
Integrates the psychological and spiritual aspects of patient care
Offers a support system to help patients live as actively as possible until death
Offers a support system to help the family cope during the patient’s illness and in their own bereavement
Uses a team approach to address the needs of patients and their families, including bereavement counselling, if indicated
Will enhance quality of life, and may also positively influence the course of illness
Is
applicable early in the course of illness, in conjunction with other
therapies that are intended to prolong life, such as chemotherapy or
radiation therapy, and includes those investigations needed to better
understand and manage distressing clinical complications
What is palliative care? Palliative care is the care of patients with active, progressive, far-advanced disease, for whom the focus of care is the relief and prevention of suffering and the quality of life.
The following should be noted:
active disease: this activity can be confirmed and measured objectively by clinical examination and investigations;
progressive disease: this too can be assessed clinically;
far-advanced disease: more difficult to define but examples are extensive metastatic disease in cancer, refractory cardiac, renal or respiratory failure and total dependency in neurodegenerative conditions or Alzheimer's Disease;
focus on the quality of life is the key feature of the definition
it is person-oriented, not disease-oriented;
it is not primarily concerned with life prolongation (nor with life shortening);
it is not primarily concerned with producing long term disease remission;
it is holistic in approach and aims to address all the patient's problems, both physical and psychosocial;
it uses a multidisciplinary or inter professional approach involving doctors, nurses and allied health personnel to cover all aspects of care;
it is dedicated to the quality of whatever life remains for the patient
palliative care is appropriate for all patients with active, progressive, far-advanced disease and not just patients with cancer;
palliative care is appropriate for patients receiving continuing "active" therapy for their underlying disease.
Palliative care improves the quality of life for patients with a life-threatening illness and for their families. It aims to relieve suffering by identifying, assessing, and treating pain and other physical, psychosocial, and spiritual problems. Palliative care can be provided whether an illness is potentially curable, chronic, or life-threatening; is appropriate for patients with noncancer diagnoses; and can be administered in conjunction with curative-aimed therapies at any stage of the illness. Hospice is a type of palliative care provided when curative treatment is no longer beneficial or desired, and when life expectancy is measured in months or less. It supports patients and their families while focusing on symptom relief and comfort. https://www.aafp.org/afp/2013/1215/p807.html
What palliative care is not Though the principles of palliative care are applicable in each of the following they are NOT palliative care services
There are seven key components of this definition.
1. Palliative care is an approach to delivering high quality care.
2. Care is holistic, encompassing physical, psychosocial and spiritual domains of need thereby requiring interdisciplinary working.
3. Thefamily, not the individual, are recognised as the unit of care.
4. The aim of care is to prevent and relieve suffering, and improve quality of life. These are the core values of good care. It follows then that this approach should be delivered across all levels and settings of care by all health and social care professionals as normal practice; palliative care is not the exclusive remit of specialists.
5. This approach to care is for anyone living with and dying from life-threatening illness. The term life threatening refers to a spectrum of illness from potentially curable to incurable. A life-threatening illness may progress to become life-limiting, with no reasonable prospect of cure; through thoughtful medical intervention and care it may be possible to extend life and improve quality of life. In babies, children and young people the term life-shortening is preferentially used to describe life-limiting conditions.
6. Care is not time-limited or based on prognosis, but based on need. Palliative care should be integrated with active treatment and extend throughout the life course to death and, for families, beyond (where bereavement care is indicated). ]
7. The full definition recognises death is an inevitable, and normal, part of life. A number of other definitions exist.
What’s the difference between palliative care and hospice? Simply put, all hospice care is palliative, but not all palliative care is hospice. As you can see in the figure below, a person may receive curative treatments, such as chemotherapy, while also receiving palliative care. Hospice care is an optional care benefit that a person may choose to use when nearing the end of their life; it does not include curative treatments. https://www.oregon.gov/DHS/PROVIDERS-PARTNERS/LICENSING/CBC/Documents/Palliative-Care-Toolkit.pdf
The concept of beginning palliative care early in the patient’s journey is illustrated by the “Bow Tie” Model above.
The blue triangle represents disease management, including chemotherapy, radiation, surgery and related psychosocial care.
The purple triangle represents palliative care, including pain and symptom management and related psychosocial care.
The patient’s illness takes them to the possible outcomes of rehabilitation and survival or end-of-life care and death, moving through a complementary continuum of disease management and palliative care, with an increasing emphasis on palliative care toward the end of life.
Parkinson’s disease is a progressive neurodegenerative condition, resulting from the death of the dopamine producing neurons in the substantia nigra of the mid brain, and is currently incurable. Thus all treatment is symptomatic, with an average life expectancy post diagnosis of 15 years, although this can vary greatly.
Because the risk of developing Parkinson’s disease increases with age, the fact that more people are now living into old age means that the overall number of people with Parkinson’s disease is also rising.
• To accompany and comfort adult and paediatric patients throughout the course of serious chronic, complex, or life-limiting conditions by continually assessing, preventing, and relieving pain and suffering of any kind – physical, psychological, social, or spiritual – using best available evidence;
• To thereby provide person-centred and family care that optimizes quality of life and maximizes the dignity of patients and their families;
• To integrate with and complement prevention, early diagnosis, and treatment of serious chronic, complex, or life-limiting health problems at all levels of any health system and thereby to improve continuity of care, strengthen health systems, and promote universal health coverage.
Promotive, preventive, curative, rehabilitative services and palliative care must be accessible to all.
We must save millions of people from poverty, particularly extreme poverty, caused by disproportionate out-of-pocket spending on health.
We can no longer underemphasize the crucial importance of health promotion and disease prevention, nor tolerate fragmented, unsafe or poor-quality care.
We must address the shortage and uneven distribution of health workers.
We must act on the growing costs of health care and medicines and vaccines. We cannot afford waste in health care spending due to inefficiency.
Lack of access to palliative care is a major problem worldwide. Every year 40 million people need palliative care, 20 million at the end of life, yet only about 3 million are able to access the care they need.
As a consequence, 18 million people die with avoidable pain and suffering. This is due to multiple reasons including a lack of access to pain medications and other essential medicines, lack of health professionals trained in palliative care, few national level policies, weak government commitment, and a lack of funding for training and implementation.
Connor SR, The Worldwide Hospice Palliative Care Alliance, Journal of Pain and Symptom Management (2017), doi: 10.1016/j.jpainsymman.2017.03.020
In several countries, in collaboration with Human Rights Watch, country reports identified human rights abuses associated with a lack of palliative care.
Callaway MV, Connor SR, Foley KM, WHO Public Health Model: A Roadmap for Palliative Care Development, Journal of Pain and Symptom Management (2017), doi: 10.1016/ j.jpainsymman.2017.03.030
"Beberapa
catatan kecil tentang perawatan paliatif dan akhir kehidupan sudah
tuliskan, semoga bisa dibaca oleh beberapa orang yang hidup pada masa
depan". (Ika, 2020)
"I have no financial relationships with manufacturers of commercial products or services. No conflicts of interests".
Whilst every effort is made to ensure the accuracy of this guide, the authors and organisations supporting it cannot accept liability for inaccuracies. Some recommendations are based on accepted practice, using medications outside their product licence, and not always with high quality evidence to support this. Individual clinical assessment and judgement is essential.
The use of this blog is voluntary and is intended to supplement.We make every effort to ensure the information in these pages is accurate and correct at the date of publication, but it is of necessity of a brief and general nature, and this should not replace your own good clinical judgement, or be regarded as a substitute for taking professional advice in appropriate circumstances.
