- 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.
https://www.npr.org/programs/death/readings/essays/hospice.html
HOSPICE CARE
A hospice is a comprehensive service provided to people living with and dying from an eventually fatal condition. This may include inpatient medical care, respite care and end of life care for people who are unable to die at home.
Hospice is a concept of care that involves health professionals and volunteers who provide medical, psychological, and spiritual support to terminally ill patients and their loved ones. Hospice stresses quality of life—peace, comfort, and dignity. Hospice services are available to persons who can no longer benefit from curative treatment and have a life expectancy of 6 months or less.
https://doi.org/10.1177/0969733011436205
PALLIATIVE CARE
Palliative care is an approach
that improves the quality of life
of patients and their families
facing the problem associated
with life-threatening illness.
Palliative care is now widely recognised
as a component of the right to health
for the population in general,
and for older adults in particular.
Provided under Universal Health Coverage (UHC),
palliative care can, in large part,
alleviate the global burden
of serious health-related suffering (SHS),
particularly the suffering of older persons
with many co-occurring conditions,
and those facing end of life.
A disproportionate number
of persons (more than 80%)
experiencing SHS live
and die in low resource countries
with severely limited access to palliative care,
and to oral morphine for pain relief.
Worldwide, only about 14% of people
who need palliative care currently receive it.
The vast majority of unpaid caregivers are
older women, who need training and basic income support.
Lack of appropriately educated healthcare providers,
combined with unduly restrictive regulations
for morphine and other essential medicines,
denies older persons access to pain relief
and palliative care.
https://social.un.org/ageing-working-group/documents/ninth/Inputs%20NGOs/IAHPC.pdf
Modes of Artificial Nutrition and Hydration include:
☛ Subcutaneous Infusions (SCI)
☛ Intravenous Infusions (IVI)
☛ Total Parenteral Nutrition (TPN)
☛ Nasogastric Tube (NGT)
☛ Percutaneous Endoscopic Gastrostomy (PEG)
☛ Radiologically Inserted Gastrostomy (RIG)
A blanket policy of whether
to give ANH or not is unethical.
Each patient must be treated
as an individual case.
The intended outcome
of a trial of IV or SC fluid
should be clear
to everyone before starting.
Subcutaneous Fluids
☛ This would usually be first line for hydration in palliative care.
☛ Maximum volume of fluid given SC would be 1L / 12hrs.
☛ Only to be administered by gravity. Do not use electronic pump e.g. Baxter pump
☛ Best given overnight if possible to minimise interference for patient.
☛ Given with standard IV giving set connected to subcut butterfly via luer lock connector.
☛ Rotate site to prevent tissue damage.
☛ Do not site needle in:
- lymphoedematous tissue
- recently irradiated skin
- area with a rash of any kind
- peripheral limbs (below knee or elbow)
https://web.archive.org/web/20170627221039/http://www.hospiceintheweald.org.uk/uploads/forms/Artificial_Nutrition_and_Hydration_November_2014.pdf
Palliative sedation can be a welcomed method to assure patient comfort but can also be profoundly distressing to the patient’s family members and/or friends. A few principles are useful when considering support for the patient’s family and friends:
- ☛ Provide an opportunity for the patient, if possible, to express what they may want from their loved ones, or would find comforting, during the time they are sedated.
- ☛ Ascertain the level of involvement that the family wants in the process.
- ☛ Family and friends should be allowed and be encouraged to be with the patient. In many situations, an opportunity to say goodbye is of critical importance.
- ☛ Family and friends often need repeated reassurance that other methods have been sufficiently tried and/or carefully considered but were ineffective, and that sedation is unlikely to shorten the patient’s life.
- ☛ Family and friends should be kept informed about the patient’s well-being and what to expect.
WHO Definition of Palliative Care
Palliative care is an approach that improves the quality of life of patients and their families facing the problem 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.
HERE ARE SOME SYMPTOMS THAT PALLIATIVE CARE MAY ADDRESS
The AMBER care bundle has four key interventions for patients whose potential for recovery is uncertain, with clear timelines for response.
- Talking to the patients and their family to let them know that the healthcare team has concerns about their condition, and to discuss their preferences and wishes
- Confirming the current medical plan
- Deciding together how the patient will be cared for should their condition get worse
- Agreeing the plan with all the clinical team responsible for the patient’s care as well as the patient and family.
RCGP and Marie Curie UK General Practice Core Standards for Advanced Serious Illness and End of Life Care. The Daffodil Standards are a blend of quality statements, evidence-based tools, reflective learning exercises and quality improvement steps.
https://www.rcgp.org.uk/
Acute Pain
- ☛ Indicates tissue injury-potential / actual
- ☛ Autonomic responses more dominant
- ☛ Self limiting
- ☛ Intensity reduces as healing progresses
- ☛ Acute pain is protective; it is a symptom
- ☛ Multi-factorial with neurochemical changes
- ☛ Vegetative responses more dominant
- ☛ Unremitting, progressive
- ☛ Constant reminder of a life threatening disease
- ☛ Chronic pain takes on characteristics of a disease
https://www.ipanel.ca/
So, how do we achieve a good death?
You can divide the steps required into 6 steps:
- Thinking and talking about death
- The warning shot
- Choosing where and how you would like to be cared for in your final illness
- How should your funeral be conducted?
- Where should you be buried?
- How should your estate be divided after death?
Managing Comorbidities and Deprescribing in Palliative Care
https://bit.ly/ComorbiditiesPC
Identifying spiritual needs and resources in ways that
- Respect patients’ perspectives and do not infringe privacy;
- Involve all members of the interdisciplinary team to the extent that they are able and willing to contribute;
- Permit clear documentation of needs, strategic responses to these needs, resources required, and outcomes;
- Integrate strategies into an overall care plan in ways that are readily understood by all members of the interdisciplinary team;
- Provide a shared framework for continuity of care between community agencies and inpatient services; and
- Provide a place for religious care but do not conflate spiritual issues with religious practice. While spiritual care in general may be provided by a team, specific religious care is best provided by a person from the same faith community, preferably one willing to participate in the team.
Here are some symptoms that palliative care may address:
- Pain
- Constipation
- Nausea and vomiting
- Diarrhea
- Bowel or bladder problems
- Loss of appetite, weight loss, or wasting
- Shortness of breath or labored breathing
- Coughing
- Depression
- Delirium or mental confusion
- Weakness
- Difficulty sleeping
"Palliative Care is for treatment of pain, and suffering from a variety of symptoms when there is no cure for the underlying condition. If the CDC and the states exempt it- it is exempted. The certificate is a plan for incurable disease with intractable pain and discomfort. This is the basis of humane medical practice going back centuries. If we healers cannot provide comfort to our patients, we need to find other professions."
https://diigo.com/0hubok
‘death rattle’
Is Refusing Treatment Considered Suicide?
Palliative Care and Pain Management at the End of Life
INTERVENTIONS FOR PATIENTS WHO ARE IMMINENTLY DYING
- Intensify ongoing care.
- Try to ensure privacy (if not at home, arrange for private room if possible).
- Discontinue diagnostic tests.
- Reposition for comfort as appropriate.
- Avoid unnecessary needle sticks.
- Provide mouth care (e.g., hydrogen peroxide/water solution).
- Treat for urinary retention and fecal impaction.
- Ensure access to medication even when oral route is not available.
- Prepare to meet request for organ donation and autopsy.
- Allow patient and family uninterrupted time together.
- Ensure the patient and family understand the signs and symptoms of imminent death and are supported through the dying process.
- Offer anticipatory bereavement support.
- Provide support to children and grandchildren.
- Encourage visits by children if consistent with family values.
- Support culturally meaningful rituals.
- Facilitate around-the-clock family presence.
- Ensure that caregivers understand and will honor advance directives.
- Provide respectful space for families.
- Facilitate closure.
The INCTR PAX team produced the INCTR Palliative Care Handbook at the request of healthcare professionals providing palliative care in low and middle income countries for a quick and practical reference book.
http://www.inctr.org/resources/inctr-publications/index.html
Palliative Care Wales
PAIN & SYMPTOM
CONTROL GUIDELINES
FOR ADULTS
FOR STAFF PROVIDING
GENERALIST PALLIATIVE CARE
https://www.england.nhs.uk/north-west/wp-content/uploads/sites/48/2020/01/Palliative-Care-Pain-and-Symptom-Control-Guidelines.pdf
WHEN TO ASK FOR PALLIATIVE CARE
GUIDING PRINCIPLES FOR CONVENING
AND CONDUCTING FAMILY MEETINGS
☛ Family meetings can be a useful way to assist patients and family members to clarify goals of care, consider site of care options, and to share information. Ideally they provide a safe environment where issues and questions can be raised and appropriate strategies agreed upon.
☛ Strategies to support family carers are a core component of palliative care; hence service providers have a responsibility to offer family meetings based on need.
☛ Service providers should view family meetings as mutually beneficial. They are not only potentially valuable for patients and family carers; they may also provide a resource effective way to explain what the service can and cannot offer. Such meetings provide an opportunity to triage priority issues and a way to make referrals to other health professionals or other institutions early in the care planning phase.
☛ Family meetings should not be used as an opportunity for health care professionals to debate a patient’s medical status; in this situation, a case conference should be convened prior to the family meeting.
☛ Family meetings should not be saved for ‘crisis’ situations. Instead, a preventative approach is advocated where issues are anticipated before they become major dilemmas. Hence a proactive rather than reactive approach to care is fostered.
☛ Ideally, family meetings are offered routinely on admission, and conducted at a pertinent time thereafter.
☛ Facilitators of family meetings require appropriate skills in group work, therapeutic communication and palliative care. We contend that the decision about who (i.e. which discipline) should convene and facilitate a family meeting is best determined on pragmatic grounds (local, site specific reasons) and not based on hierarchical reasons (i.e. based on authority). Hence the multidisciplinary team should determine who conducts the family meeting and presumably this may change dependant upon skills, knowledge of the family and resources.
☛ Occasionally, family members may want to withhold details of the patient’s prognosis from the patient; there may incongruent wishes about the site of care; ‘desire to die’ statements may have been made by the patient; or there may be conflict within the family or difficulties regarding the transition from curative treatment to palliative care. In these circumstances we recommend the key resources and references to support therapeutic communication outlined in the reference list. Additionally, if it is known in advance that there is significant conflict (or other major issues) within the family, involving a family therapist or health psychologist may be appropriate.
☛ Pre-planning for the actual meeting is imperative as is comprehensive follow up after the meeting.
☛ Suitable resources should be available to patients and family members who attend the meeting in order to complement the verbal information (e.g. brochures about services available, carer guidebooks, treatment and drug information, etc).
MYTHS ABOUT PALLIATIVE CARE
https://pharmacopallcare.blogspot.com/2020/09/myths-about-palliative-care-ika-syamsul.html
Ooooookay kan, Bro!
