This guideline presents palliative care assessment and management strategies for primary care practitioners caring for adult patients aged  19 years with incurable cancer and end stage chronic disease of many types, and their families. NOTE: Care gaps have been identified at important transitions for this group of patients: - upon receiving a diagnosis of incurable cancer; - when discharged from active treatment to the community; - while still ambulatory but needing pain and symptom management; and - at the transition when End-of-Life care may be needed. Diagnostic code: 239 (neoplasm of unspecified nature) Palliative care planning fee code: G14063- Identify patients who would benefit from palliative care early in the illness trajectory: a palliative approach addresses the need for pain and symptom management, as well as psychosocial and spiritual support of patients and their families, beginning in disease management through to survivorship or End-of-Life care. - Encourage patients to have an advance care planning discussion with family and/or caregivers. - Establish goals of care with the patient and families/caregivers. - Before ordering investigations, ensure that the results will change management to improve quality of life and/or prognostication, consistent with the patient's goals of care. - Organize care coordination around key illness transitions.The World Health Organization 1 defines palliative care as 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; - 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; 'Total care' means that the patient is completely unable to eat without help, toilet or do any self-care. Depending on the clinical situation, the patient may or may not be able to chew and swallow food once prepared and fed to him or her.#
- will enhance quality of life, and may also positively influence the course of illness; and - 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.
The bow tie model of 21st century palliative care consists of two overlapping triangles resembling a bow tie, with an arrow pointing from left to right. 2 The first triangle represents disease management and the second triangle is palliative care. The base of the palliative care triangle (end of the model) includes both death and survival as possible outcomes. The arrow indicates that this is a dynamic process with a gradual switch in focus. The key difference between this and traditional models is that survivorship is included as a possible outcome. Patients diagnosed with incurable cancer or advanced disease may not identify themselves as requiring palliative care. A palliative approach addresses the need for pain and symptom management, and the psychosocial and spiritual support of patients and their families, even if they choose to undergo life-prolonging treatments such as chemotherapy, radiotherapy, and/or surgery.
A proactive chronic disease management approach will help prevent care gaps that may occur during transitions in care and/or when the patient is not supported by a cancer agency or community hospice palliative care program.
A palliative approach is needed for patients living with active, progressive, life-limiting illnesses who need pain and symptom management and support around practical or psychosocial issues, have care needs that would benefit from a coordinated or collaborative care approach, and/or have frequent emergency room visits. Assess where patients are in their illness trajectory, functional status, and symptom burden. Clarify goals of care in a culturally sensitive manner.
Estimating prognosis allows optimal use of limited time for patients and families. Rapid change in clinical condition is an understandable and helpful sign. Although prognoses can only be estimated, poor prognostic factors include:
- progressive weight loss (especially > 10% over 6 months);
- rapidly declining level on the Palliative Performance Scale (PPS) (refer to Appendix A: Palliative Performance Scale (PPS));
- dyspnea; - dysphagia; and - cognitive impairment.
} Investigations (Refer to Appendix B: Possible Investigations and Interventions)
Before ordering investigations, ensure that the results will change management to improve quality of life and/or prognostication, consistent with the patient's goals of care. Investigations may be indicated to:
- better understand and manage distressing clinical complications;
- assist in determining prognosis;
- clarify appropriate goals of care; and - determine whether all options have been considered before admission to hospice.
Evaluate performance status and symptom burden in order to accurately assess a patient's need for added supports and symptom management. Assessment scales are commonly used to facilitate communication and collaboration among providers (e.g., Appendix A: Palliative Performance Scale (PPS), Associated Document: Supportive & Palliative Care Indicators Tool (SPICT TM, and Appendix C: Edmonton Symptom Assessment System (ESASr)).

# Monitor patient's functional capacity
Use the PPS (refer to Appendix A: Palliative Performance Scale) to base care on a patient's functional capacity and prognosis. "The single most important predictive factor in cancer is performance status and functional ability -if patients are spending more than 50% of their time in bed/lying down, prognosis is likely to be about three months or less". 3 The SPICTTM outlines general and disease-specific indicators and is used to assess patients for the BC Palliative Care benefits program (Associated Document: Information about BC Palliative Care Benefits).

# Coordinate care with allied health care providers
Organize care coordination around key illness transitions. 4 To enhance coordination with allied health providers involved in the care of the patient, the following steps are recommended:

# Evaluate symptom burden
Use a scale like the ESASr (refer to Appendix C: Edmonton Symptom Assessment System) to assess symptom management. Pain and other symptoms are assigned a numerical rating between 0 (none) and 10 (most severe imaginable). Record the level and range of symptom severity, aiming for  3 and thoroughly assess for values  4. For ESASr symptom scores, using pain as an example, a useful frame of reference is: 5 - 0-1: no pain or minimal pain.
- 3: able to watch TV or read newspaper without paying much attention to pain.
- 5: pain is too distracting to find much pleasure in activities (e.g., TV, reading).
- > 5: on the verge of being or already overwhelmed by pain.
- 10: the worse pain that you could imagine.

# Establish goals of care with patients and families
As the underlying condition progresses, a patient's goals of care often become less disease-specific and more palliative.
Discuss a patient's wishes before clinical deterioration, possibly over several visits. Start by determining how much the patient desires to know about their disease and how much they desire to participate in decision making. When translation is required, a professional interpreter (rather than a family member) is advisable. - Establish the caregiver's ability to provide care at home, if that is the patient's preference.
- Review the goals of care regularly, and when there is a change in clinical status.

# Management strategies: non-pharmacologic
Lifestyle management - Exercise: Regular exercise and activity has been proven to improve quality of life and function in cancer survivors. 7
- Nutrition: Nutritional needs are different for patients with cancer as their appetite is often reduced and forcing additional food may contribute to nausea or vomiting. When the goal is life prolongation, a consultation with a dietitian may be helpful. - Rest: Fatigue is a common accompaniment of cancer or its treatment. Adequate rest and pacing of activities is important. Poor sleep will contribute to a lower quality of life for both the patient and caregiver.
Family and caregiver support (refer to Associated Document: Resource Guide for Patients and Caregivers).
- Caregivers who take time off work can apply for the Employment Insurance (EI) Compassionate Care Benefit (refer to Associated Document: Resource Guide for Patients and Caregivers). - Registration can be made to the Palliative Benefits Program when a patient's life expectancy is estimated to be six months or less (refer to Associated Documents: BC Palliative Care Benefits Registration Form). - Completing the "Notification of Expected Death in the Home" form means families can avoid waiting for a physician or nurse to pronounce death.
Patient self-management (refer to Associated Document: Resource Guide for Patients and Caregivers)
- Encourage patients to have an advance care planning discussion with family and/or caregivers (for an example see the "My Voice" booklet in the Resource Guide). - Symptom reporting: Suggest that patients record symptoms using a numerical rating scale (0 = none to 10 = extreme) and report symptoms consistently  4. - Medications: Suggest that patients keep up-to-date medication profiles to carry with them to appointments and ER visits, including flow sheets to record breakthrough medication. Ensure that treatment of incident pain is understood. - Bowel protocol: Constipation, an opioid side effect, does not improve over time. Provide written instructions for a bowel protocol that patients may self-administer (refer to BCguidelines.ca -Palliative Care Part 2: Pain and Symptom Management and Associated Document: BCCA Bowel Protocol). - Providing help 24/7: Includes contact numbers (and hours, where applicable) for the GP on call, home nursing, and HealthLinkBC (call 811).

# Management strategies: pharmacotherapy
Refer to BCguidelines.ca -Palliative Care Guideline Part 2: Pain and Symptom Management.

# Referral to a specialist
Refer to Appendix D: Indications for Referral to a Specialist 8. Indications for referral to a tertiary palliative care unit - Referral is indicated for control of pain and other symptoms when these cannot be met in the community, and for support for severe psychological, spiritual, or social distress.

# Ongoing care Planned visits
- A shared care plan, complete with planned follow-up visits, helps patients and families feel supported.
- Planned visits proactively anticipate care transitions and care crises (refer to PSP End-of-Life Care Algorithm: ). - Recommended visit frequency depends on prognosis. For example, if the illness is stable (PPS 70%), quarterly visits are recommended, but if the illness is changing monthly, then visit monthly. More frequent planned visits are warranted in the face of more rapid decline.

# Monitoring and documentation (refer to Appendix E: Cancer Management Flow Sheet)
- Prognostic factors: Monitor for impending transition or crisis (e.g., new or accelerated weight loss, dyspnea, cognitive impairment, or change in PPS). - Signs and symptoms: Each visit, record pain scale for each pain type and location.
- Medications: In addition to slow release opioid, record use of breakthrough medications, antinauseants, and bowel protocol. Also consider adjuvant analgesics (refer to BCguidelines.ca -Palliative Care Guideline Part 2: Pain and Symptom Management). - Care plan: Ensure that supports for patient and family are arranged through Home and Community Care and also document discussions regarding patient goals and advance directives.

# Palliative care emergencies

# Medical Assistance in Dying (MAiD)
It is likely that some conversations about end of life may result in patients or families wanting to discuss Medical Assistance in Dying (MAiD). A palliative approach to care is appropriate for all people living with chronic life-threatening illness, whether or not they choose MAiD, and specialist palliative care consultation is encouraged if MAiD is being considered. MAiD is intentionally beyond the scope of this guideline. However, practitioners seeking information about it are directed to the following resources:
- BC Ministry of Health: 

# Actively dying: the End-of-Life Care check list
There are several points to consider when patients enter the dying phase:
- Review a patient's goals of care, preferred place of care, and what to do in an emergency.
- Refer the patient to home nursing if not already arranged.
- Consider hospice palliative care referrals.
- Ensure that the required forms are completed (No CPR, MOST DNR M1, Notification of Expected Death in the Home).
- Discontinue non-essential medications.
- Arrange for subcutaneous (SC)/transdermal medication administration or a drug kit to be placed in the home when a patient is no longer able to take medications by mouth (refer to Appendix F: Typical Home Drug Kit and Subcutaneous Medication List). - Arrange for a hospital bed +/-pressure relief mattress.
- Arrange for a Foley catheter, as needed.
- Leave an order for a SC anti-secretion medication (e.g., atropine, glycopyrrolate).