Illness and the prospect of dying can impact the meaning and purpose of a person's life. Thus, illness and dying have a spiritual dimension and are often perceived by patients as spiritual experiences. As people face serious illness or death, they often ask questions of meaning, value and relationships such as:

Meaning:

• Why is this happening to me? Why now?
• What is the meaning of my illness, my suffering, my death?
• What will happen to me after I die?

Value:

• Do I still have value despite changes in my appearance, productivity, independence?
• Is there anything valuable about me that will persist beyond death?

Relationships:

• Do I need to forgive or be forgiven by anyone?
• Am I loved? By whom?
• Will I be remembered after I die? Will I be missed?

https://www.icsi.org/wp-content/uploads/2019/01/PalliativeCare.pdf

TYPICAL FEATURES

Typical Features of
Palliative Care in
Promoting Excellence
Projects

1 Ongoing communication among
patients, families and providers

2 Advanced care planning and
patient-centered decision
making that is iterative and
reflective of patients' values and
preferences

3 Formal assessment and treatment
of physical and psychosocial
symptoms

4 Care coordination (also known as
case management) to streamline
access to services and monitor
quality of care

5 Spiritual care

6 Anticipatory guidance in coping
with illness and issues of life
completion and life closure

7 Crisis prevention and early crisis
management

8 Bereavement support

9 An interdisciplinary team
approach to care

10 24/7 availability of a clinician
knowledgeable about the case

https://web.archive.org/web/20210707070414/https://storage.googleapis.com/edcompass/quantum/materials/0111_Palliative%20Care%20and%20Cancer%20Treatment.pdf

SPIRITUAL AND RELIGIOUS CARE

Religious care is given in the context of shared religious beliefs, values, liturgies and lifestyle of a faith community.

Spiritual care is usually given in a one to one relationship, is completely person centred and makes no assumptions about personal conviction of life orientation

Spiritual Care is not necessarily religious. Religious care, at its best is always spiritual. (NHS HDL(2002) 76)

Spiritual

Spiritual needs are assessed and addressed and may include the following:

• exploring the individual’s sense of meaning and purpose in life;

• exploring attitudes, beliefs, ideas, values and concerns around life and death;

• affirming life and worth by encouraging reminiscing of the past;

• exploring the individual’s hopes and fears regarding the present and future;

• exploring the individuals concerns about how their illness will affect others;

• exploring the ‘WHY?’ questions in relation to life, death, illness and suffering.

Religious

Religious needs are assessed and addressed and may include the following:

• ceremonies;

• meditation;

• prayer;

• rites;

• sacraments;

• worship.

https://web.archive.org/web/20210110014129/http://www.wales.nhs.uk/sites3/Documents/420/Standards%20for%20Spiritual%20Care%20in%20the%20NHS%20-%20pdf.pdf

PALLIATIVE CARE GUIDELINES
https://pharmacopallcare.blogspot.com/2020/09/palliative-care-guidelines-ika-syamsul.html

Regularly remind your team why they have supportive and palliative care meetings:

• On average 1% of your practice population will die each year.
• Most of these deaths can be predicted.
• Identifying patients thought to be in their last years of life enables earlier discussion of their wishes and improved care at the end of life.
• A proactive team approach to the shared care of frail elderly people with multiple co-morbidities, including cancer, becomes more possible.
• Well run meetings support individual clinicians to not only care for their patients better, but to also care for themselves.
• ‘Branding’ the meetings as supportive and ensuring the name of your register includes the term ‘supportive’ can make earlier conversations easier.Regularly remind your team why they have supportive and palliative care meetings

https://www.macmillan.org.uk/_images/top-tips-supportive-and-palliative-care-meetings_tcm9-315966.pdf

Getting Started: Guidelines and Suggestions for those Starting a Hospice / Palliative Care Service 2nd Edition

Advantages of a Consultation Team (HPCT) over a dedicated Hospital Palliative Care Unit (HPCU) include:

→ No need to fight for space, equipment, facilities
→ Minimal personnel commitment (no night call, no holiday relief unless readily available)
→ Ability to train other disciplines by hands- on end of life care and example
→ Use of pre-existing diagnostic and therapeutic resources and other hospital staff
→ Use of the hospital pharmacy and its specialist pharmacists

Disadvantages of a Consultative Service (HPCT) include:

→ The inability to develop team expertise in a dedicated unit such as a palliative care unit
→ The inability to control medication administration.
→ The difficulty (though not the impossibility) of doing research
→ The difficulty of doing formal bedside teaching when the HPCT does not have its “own beds” .
→ The consultation services having to rely on the staff and resources of the institution to provide such services as physiotherapy, occupational-, music-, art -therapy and pastoral care.

https://hospicecare.com/
http://www.geocities.ws/yapalindo/hospicepalliativecare/

BARRIERS TO ACCESS TO PALLIATIVE CARE
https://pharmacopallcare.blogspot.com/2020/09/barriers-to-access-to-palliative-care.html

A conceptual framework toward understanding ‘‘actively dying,’’ ‘‘end of life,’’ ‘‘terminally ill,’’ ‘‘terminal care,’’ and ‘‘transition of care.’’ Based on our systematic review, end of life, terminally ill, and terminal care period are synonymous and apply to patients with progressive disease with months or less of expected survival. Actively dying is related to patients with days of survival, and transition of care is related to changes in the place of care, level of care, and goals of care.
https://gohrbandt.files.wordpress.com/2016/04/concepts-and-definitions-of-palliative-care.pdf

Some people think that starting hospice palliative care is a last resort, that it means they're giving up on life. Some think that hospice palliative care means a lower level of medical care. But hospice palliative care is simply a type of care that focuses on the quality of your life instead of on continuing with treatment to prolong your life.
https://diigo.com/0hujsl

• Assess the patient and explore their concerns and expectations.

• Help patients and their carers to understand symptoms

• Treat the cause of the pain where possible

• Use the analgesic ladder at the appropriate step

• Prescribe analgesia on a regular basis

• Prescribe appropriate analgesic for breakthrough pain

• Explain the management plan to patient and carer

• Review analgesic needs frequently

https://www.pilgrimshospices.org/wp-content/uploads/2017/09/Symptom-control-guidelines-5th-Edition.pdf

The use of medicines for off-label purposes
is necessary when the clinical need
cannot be met by the specifications
of its marketing authorisations (MA),
e.g. for an unauthorised indication,
or in doses, preparations, patient population
or route not covered by the MA.

In practice, approximately 25%
of medicines prescribed
for palliative care patients
are used off-label
(e.g. when given
by subcutaneous injection
when only licensed
for IM or IV use;
for the treatment of nausea
and vomiting when only licensed
as an antipsychotic;
or when mixing medicines
in a syringe before administration
by continuous infusion).

https://web.archive.org/web/20210201050059/https://www.harrogateandruraldistrictccg.nhs.uk/data/uploads/commissioning/yh-guide-to-symptom-management-in-palliative-care.pdf

PALLIATIVE MEDICINE COMMUNICATION CARD

The importance of end-of-life care conversations that have been proved to increase the feeling of safety and decrease feelings of being abandoned in a challenging life situation.

It is hoped that this study may guide HCP in how to initiate and carry through conversations about wishes and priorities in patients with palliative care needs.
https://journals.lww.com/
https://t.me/c/1305911983/13

"Hospice care is appropriate any time after a doctor has estimated that a patient has six months or less left to live, and both doctor and patient have decided to move from active curative treatment to a regimen more focussed on quality of life.

The prognosis might mean the person has several months of rich, full life in front of them or just a few days. Hospice care can help anyone on that spectrum with a full range of direct care, emotional and spiritual support, advice, and information. We can also help friends and family of patients through the periods before and after the end of life.

When hospice is called in well before the end of life, the stages of care can be broken down as below- but remember that every patient is different, with different needs and a different pathway."

https://diigo.com/0huc30

PALLIATIVE CARE CLINICAL ASSESSMENT TOOLS
https://pharmacopallcare.blogspot.com/2020/09/palliative-care-clinical-assessment.html

The eight NCP domains of palliative care:

Structure and processes of care, including: interdisciplinary assessment and care planning; team composition, qualifications, and professional development; incorporation of volunteers; quality assurance and performance improvement; interorganizational collaboration across the continuum of care; and, the physical environment in which palliative care is provided.
Physical aspects of care, which includes assessment of, and multidimensional approaches—including, but not limited to pharmacology—to address pain and other physical symptoms. The domain also emphasizes the development and implementation of policies to guide pain treatment and the prescribing and dispensing of opioids.
Psychological and psychiatric aspects of care, including: the interdisciplinary team’s assessment of, and response to, illness-related psychological reactions (such as grief) and psychiatric conditions (such as anxiety). The domain also specifically describes elements of bereavement services.
Social aspects of care, including: assessment, care planning and interventions to address social needs, such as access to financial resources, and to maximize social well-being, such as family communication and coping. The domain also outlines core elements of a palliative social assessment and stresses the role of professional social work in palliative care.
Spiritual, religious and existential aspects of care. This domain applies a broad definition of spirituality to assessment and intervention, including at the time of death and post death. The domain also describes the complementary roles of spiritual care professionals and other interdisciplinary team members in addressing patients’ and families’ spiritual, religious and existential concerns.
Cultural aspects of care. Drawing on wide-ranging definitions of culture, this domain illustrates how palliative care programs serve patients and families in a culturally and linguistically appropriate manner, such as by eliciting and supporting perceptions and practices related to illness or caregiving. The domain also identifies ways in which palliative care providers strive for cultural and linguistic competence at both practitioner and program levels.
Care of patients at the end of life, including the palliative care team’s role in addressing physical symptoms and responding to patients’ and families’ psychosocial, spiritual and cultural needs at the end of life and following death. The domain also underscores the integral role hospice programs play in end-of-life care.
Ethical and legal aspects of care, including the integration of person-centered assessment and care planning with healthcare decision-making, such as in the advance care-planning process. The domain also addresses complex ethical issues common in palliative care and makes clear the need to adhere to professional, state and federal laws, regulations and standards.

https://www.asaging.org/blog/national-consensus-project-updates-palliative-care-guidelines

Breakthrough pain occurs between regular doses of analgesia; it reflects an increase in pain level beyond the control of the baseline analgesic.

In this situation the patient should be given an additional, or breakthrough, dose of their regular opioid.

The breakthrough (BT) dose ordered should be one-twelfth to one-sixth of the total daily dose (50% to 100% of the regular 4-hourly dose). The patient should be instructed to take the BT dose as often as necessary to control the pain. BT doses should be given no more frequently than every 30 minutes.

The regular analgesic dose should be reviewed if BT pain is not controlled after 3 doses.

The regular dose of opioid should be taken at the scheduled time.
http://www.gppainhelp.com/Treatment_Tree_Breakthrough.html

Financial considerations

A life-threatening illness or injury can have a significant impact on you and/or your family’s financial situation, plans and goals.
Financial changes may include:

health-related expenses, such as medication, equipment and specialist fees

costs related to transport, accommodation, child-care or complementary therapies

loss of income

difficulty with paying for debts and bills.

https://www.qld.gov.au/health/support/end-of-life/living-with-terminal-illness/finance

Revised 4-step analgesic ladder NSAID—nonsteroidal anti-inflammatory drug, TENS—transcutaneous electrical nerve stimulation. *Acute and chronic pain.
https://www.cfp.ca/content/60/3/235

The WHO also recommends that pain relief medication be given according to the following framework.

• By mouth – Oral administration of medication is an effective, convenient and inexpensive method of medicating patients and should be used wherever possible. Medicines are easy to titrate using this route.
• By the clock - Medications for persistent pain should be administered around the clock, with additional doses as needed. This allows continuous pain relief by maintaining a constant level of drug in the body, and helps to prevent pain from recurring. The goal is to prevent rather than react to pain.
• By the ladder – The WHO ladder is a validated and effective method of ensuring therapy for pain. Medications should be administered according to the severity of the pain and drug suitability.
• On an individual basis - Individualise the pain management, different patients will require different dosages and/or intervention to achieve good pain relief.

Patients should be carefully monitored:

For any change in pain patterns, or the development of new pain.
To ensure adequate pain control.
To minimise or prevent side effects from their analgesia.

http://www.palliativecarebridge.com.au/resources/AssessmentTools_Book_Final.pdf

Palliative care is the provision of caring

and dignified support

and services for people of all ages

facing a life-limiting condition.

It is provided wherever the person is,

whether that is in the home,

hospital,

community clinic

or hospice.

https://www.healthnavigator.org.nz/health-a-z/p/palliative-care/palliative-care-overview/

20 health conditions that most commonly result either in death or in suffering that is severe enough to require a palliative care intervention for people of any age: