It is not time limited, allowing individuals who are ‘upstream’ of a 6-month or less terminal prognosis to receive services aligned with palliative care principles. Additionally, individuals who qualify for hospice service, and who are not emotionally ready to elect hospice care could benefit from these services.
HOSPICE
This care is provided by an interdisciplinary team who provides care encompassing the individual patient and their family’s holistic needs.
for people with serious illness
that focuses on the best quality of life
for both the patient and his or her family.
To palliate comes from the Latin word 'palliare',
meaning 'to cloak', or to ease symptoms
without curing the underlying disease.
The primary goal of palliative care
is to provide quality of life for the patient and family,
achieved through an interdisciplinary approach
that includes symptom control and support
for the patient and family.
Palliative care is focused on
providing patients with relief from the symptoms,
pain, and stress of a serious illness
- whatever the diagnosis.
The interdisciplinary team consists of
doctors, nurses, and other specialists
who work with a patient's other doctors
to provide an extra layer of support.
Palliative care is appropriate at
any age and at any stage in a serious illness,
and can be provided together with curative treatment.
Hospice is a philosophy of care that focuses on
the palliative care needs of the patient unit
(patients and carers),
to relieve suffering and promote comfort
during the end-of-life transition
when curative therapy is no longer desired and/or an option.
Palliative care should be integrated
into the daily clinical practice of patient care,
regardless of the underlying illness or stage of disease.
https://bestpractice.bmj.com/topics/en-gb/1020
HOSPICE AND PALLIATIVE CARE ORGANIZATIONS
The National Hospice and Palliative
National Association for Hospice and Home Care / Hospice Association of America
American Academy of Hospice and Palliative Medicine (AAHPM)
American Hospice Foundation
Hospice Foundation
Center to Advance Palliative Care (CAPC)
National Palliative Care Research Center
Centers for Medicare and Medicaid Services
Hospice Patients Alliance, Inc.
Hospice Directory
Hospice and Palliative Care Nurses
Get Palliative Care
International Association for Hospice and Palliative Care
Worldwide Palliative Care Alliance
World Home Care and Hospice Organization
Hospice Volunteer Association
www.hospicevolunteerassociation.org
Canadian Hospice Palliative Care Association
Help the Hospices – UK
Hospice Education Institute
All hospice is palliative care, but not all palliative care is hospice.- Palliative care discussion or referral should be considered whenever the patient develops a serious illness.
- Palliative care discussions should be included whenever a patient with a life-limiting or life-threatening illness presents, including the hospital ICU or emergency department.
HOSPICE PALLIATIVE CARE
Hospice palliative care aims to relieve suffering and improve the quality of living and dying.
Hospice palliative care strives to help patients and families:
• address physical, psychological, social, spiritual and practical issues, and their associated expectations, needs, hopes and fears
• prepare for and manage self-determined life closure and the dying process
• cope with loss and grief during the illness and bereavement.
Hospice palliative care aims to:
• treat all active issues
• prevent new issues from occurring
• promote opportunities for meaningful and valuable experiences, personal and spiritual growth, and self-actualization.
U.S. Model views incurable disease as a medical problem with a social component
- • 60% of deaths over age 60 occur in a hospital
- • Medical care is increasingly aggressive up to the last few days of life
- • Estimated that 11% of care in Intensive Care Units is futile
- • U.S Palliative care began in 1967 originally as a model of care for cancer patients, now provided for any age, and any stage of illness.
- • Addressing all distressing symptoms as opposed to only pain can lead to better outcomes.
- • Expanding palliative care to more than just hospice is essential.
- • Following cultural preferences regarding disclosure, advance planning, and decisional process improves patient and family satisfaction
- • Community-based palliative care is only available through hospice care, thus excluding a large number of patients.
- • Core components of palliative care include assessment of physical and psychological symptoms, support for spiritual distress, expert communication and coordination of care.
- • Spirituality is of high importance to patients however, less than half of physicians are open to discussing spiritual concerns
- • For health related decisions, U.S. culture known for emphasizing patient autonomy
- • Religion is used as a coping mechanism.
- • Minority cultures prefer family-based, physician-based or shared physician-and- family based decision making.
- • In the U.S. and Western Europe, cross-cultural differences occur along four dimensions: autonomy, beneficence, nonmaleficence and justice.
- • Education about patient’s differential spiritual needs is not part of most medical school curriculum, so physician’s are forced to depend on their own religious experiences in dealing with such issues.
SUGGESTED CRITERIA
Suggested Criteria for Consideration of Specialist Palliative Care Assessment at Time of Hospital Admission
Surprise
You would not be surprised if the patient died within 12 months
Frequent admissions
Repeated admission for same condition within several months
Complex symptoms
Admission for difficult symptom or psychological need
Complex care requirement
Functional dependence or complex home support needed
Failure to thrive
Decline in functional status, weight, or ability to care for self
Advance care planning needs
No history of completing an advance care planning document or having a discussion
Limited social support
Family stress, chronic mental illness, lack of caregivers
Limited prognosis
Metastatic or locally advanced cancer, hip fracture with cognitive impairment, out-of-hospital cardiac arrest. Any one of these criteria may be sufficient to warrant consultation; multiple criteria need not be present
Keith M. Swetz, MD, MA
Arif H. Kamal, MD, MBA, MHS
doi:10.7326/AITC201803060
Integration of Oncology and Palliative Care
Hui D, and Bruera E, Nat Rev Clin Oncol 2016;13(3):159-171.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4772864/
https://web.archive.org/web/20200708082547/https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4772864/figure/F3/?report=objectonly
Care needs of patients with advanced-stage cancer.
- a the care needs of a patient with cancer can be classified under three domains: cancer management; symptom management and personal care needs; and the management of comorbidities. Considerable interactions exist between these domains and, therefore, interventions relating to one domain of care can influence the needs pertaining to another (arrows), which necessitates dynamic monitoring of the patient and modification of their care. For instance, chemotherapeutic agents can cause renal failure, which requires the initiation of different medical interventions and can also affect the ability of the patient to proceed with oncological investigations and treatments. Disease progression might affect the emotional state of the patient, which might, in turn, affect her adherence to treatment. To optimize patient outcomes, the oncology team, palliative-care team, primary-care team, and other subspecialists need to collaborate closely and communicate often.
- b Personal care needs can be further subdivided into acute issues, chronic issues, psychosocial issues, and existential and spiritual issues. Relevant expertise, close collaboration and interdisciplinary teamwork, and adequate resources are important requirements to comprehensively address these supportive-care issues, longitudinally.
https://www.icsi.org/guideline/palliative-care/
☛ Care planning and intervention
☛ Communication and language
☛ Comprehensive assessment of patient and family needs
☛ Cross-cultural knowledge and skills
☛ Disparities in accessing palliative and end of life care
☛ Facilitation of care team and family meetings
☛ Grief and bereavement theory
☛ Impact of diversity including ethnicity, religion,
☛ culture and identities
☛ Interdisciplinary and inter-organizational collaboration
☛ Legal considerations around illness and end of life
☛ Manifestations of pain
☛ Medical decision making
☛ Multidimensional stages of the dying process
☛ Psychosocial interventions for symptom management
☛ Quality improvement
☛ Research
☛ Self-awareness and self-reflective practice
☛ Settings of palliative and end of life care
☛ Social policy and advocacy
☛ Teaching and education
https://web.archive.org/web/20210130125529/https://journals.sagepub.com/doi/full/10.1177/1049909120960709
GUIDELINES FOR PHYSICIANS IN DISCUSSING
Guidelines for Physicians in Discussing Values, Goals, and Preferences with Patients Near the End of Life.
- ☛ If possible, begin these conversations early in the illness, rather than waiting until a medical crisis occurs or until death is imminent. Revisit these discussions when the patient’s condition changes substantially.
- ☛ Ask the patient about his or her understanding of the current medical situation and about additional diagnostic and therapeutic options.
- ☛ Assess the patient’s and family’s information-sharing preferences. What kinds of information do they wish to have, what would they prefer not to know, and who should be involved in discussions about the patient’s care? Similarly, ask about their preferences for decision making. How should important decisions be handled? Will key decisions be made by the patient, family members, or the clinician, or will the decisions be made collaboratively?
- ☛ Answer questions as clearly as possible and provide simple, clear, jargon-free information about the patient’s condition, prognosis, and options for treatment. Clarify any misconceptions the patient or family may have. In general, patients cannot make good decisions about their care without some understanding of their prognosis.
- ☛ Inquire about and address the patient’s concerns. For example, ask, “What are your main worries or fears about your situation?” Ensure that attention is paid to the patient’s comfort.
- ☛ Ask about “unacceptable states” — that is, states of existence or losses of critical functioning that a given patient wants to avoid (e.g., a state in which mechanical ventilation would be required indefinitely or in which the patient would be unable to communicate meaningfully with family members).
- ☛ After the patient has been informed about the situation and prognosis, discuss and clarify the patient’s values, goals, and preferences for care.
- ☛ With this shared knowledge about goals for care, recommend a plan for end-of-life care. The clinician should not simply ask, “What do you want?” nor should the clinician offer to use harmful or nonbeneficial treatments (e.g., cardiopulmonary resuscitation that will almost certainly be unsuccessful and will not serve the patient’s goals16). When decisions need not be made urgently, allow time for the patient to reflect on choices, obtain further information, or discuss the matter further with family or other advisors.
ADVANCE DIRECTIVES
An advance directive may be one of several types of legally executed documents that contain an individual’s instructions for the provision, withholding, or withdrawal of life-sustaining treatment. Every adult, regardless of health status, should have a health care agent (HCA) and a living will because it is often not predictable when these will be needed. Making decisions in a medical crisis is stressful and may not be in accordance with the patient’s preferences. The different types of advance directives are as follows.
Living Will
This is a legal document that states the medical treatments that the individual would, and would not, want if the individual is unable to make or communicate such decisions. These treatments might be used to prolong life or to bring symptom relief, and may include resuscitation, mechanical ventilation, nutrition and hydration, tube feeding, dialysis, antibiotics or antiviral medication, diagnostic tests, surgery, transfusions, and comfort care.
Health Care Agent (aka Health Care Proxy, Health Care Surrogate,
Health Care Power of Attorney, Durable Power of Attorney) This is a person named by the patient to make medical decisions, according to the patient’s wishes, when the patient is no longer able to communicate. The HCA may be authorized to consent or withhold consent for medical treatment, hire or fi re medical personnel, and make decisions about medical facilities. The HCA cannot override the patient’s preferences if the patient is able to make and communicate treatment decisions.
Do Not Resuscitate (DNR), Do Not Attempt Resuscitation (DNAR) or Do Not Intubate (DNI) Order
These may be noted in the medical record apart from a living will, or these preferences may be included in the living will. Increasingly, Allow Natural Death (AND) is being used instead of DNR.
Medical Orders for Life-Sustaining Treatment
Medical Orders for Life-Sustaining Treatment (MOLST) is a medical order in which the physician records patient preferences for medical treatment wanted and not wanted. MOLST is appropriate for persons likely to be in their fi nal year of life. It is portable and stays with patients as they move through different care settings. MOLST differs from a living will because it is a medical order that is actionable and can be followed by doctors and fi rst responders (e.g., emergency medical technicians, police, and fi re departments; Hickman, Sabatino, Moss, & Nester, 2008). In some states, this is called Physician Orders for Life-Sustaining Treatment (POLST).
Social workers can help facilitate conversations about preferences for treatment at end of life between patients and health care agents. Advance directives should be reviewed and revised as needed when there is a new diagnosis, change in prognosis, the patient’s wishes change, or a new HCA is appointed.
Overall responsibilities of a GP regarding end-of-life care
https://bit.ly/2TdvMw1
- exploring the patient’s wishes and needs around end of life
- working to maximise the quality of the patient’s remaining time
- working to ensure a "good" death as far as possible, in the place and manner of the individual’s choosing
- working with the family and significant others, and addressing their worries and expectations
- supporting care workers in the community, including staff in care homes
- more broadly, commissioning services, and balancing very limited resources.
The only broad palliative care guideline, the recommendations are listed below:
☛ Clinicians should discuss the likelihood of disease progression to death with patients and/or their families.
☛ Clinicians should initiate or facilitate advance care planning for all adult patients and their families with regular review as the patient’s condition changes.
☛ Clinicians should use a validated assessment tool to assess palliative care needs.
☛ Care conferences with the patient, family, and an interdisciplinary health care team are recommended on an ongoing basis to discuss patient’s condition, course of illness, treatment options, goals, and plan of care.
☛ Clinicians should engage in ongoing communication with the patient and/or family regarding the dying process and the treatment plan.
☛ A cultural assessment should be an integral component of the palliative care plan.
☛ Palliative care should begin at the time of diagnosis of a serious condition and continue through cure, or until death, and then into the bereavement period.
☛ Clinicians should recognize those patients who are receiving non-beneficial, low-yield therapy.
☛ Informed consent should be obtained for any treatment or plan of care from either a patient with decision-making capacity or an appropriate surrogate decision-maker.
☛ The physical aspects of the patient’s serious illness should be an integral component of the palliative care plan.
☛ Clinicians should follow the established best practices of utilizing professional medical interpreters when English is not a patient’s first language or when there are gaps in understanding English.
☛ A psychological assessment should be an integral component of the palliative care plan.
☛ Palliative care discussion or referral should be considered whenever the patient develops a serious illness. Palliative care discussions should be included whenever a patient with a life-limiting or life-threatening illness presents, including the hospital ICU intensive care unit or emergency department.
☛ A social assessment should be an integral component of the palliative care plan.
☛ A spiritual assessment should be an integral component of the palliative care plan.
☛ Clinicians should utilize clinically trained chaplains as members of the interdisciplinary health care team to provide patient-centered spiritual care and support.
The care of dying adults in the last days of life guideline made recommendations in the following areas:
- Recognizing when a person may be in the last days of life,
- Communication,
- Shared decision-making,
- Providing individualized care,
- Maintaining hydration,
- Pharmacological interventions, and
- Anticipatory prescribing.
Advance care planning forms
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