# Guideline Resource Unit
Background Currently, patients and families living with advanced cancer experience significant distress when the transition from cancer-directed therapies to ongoing palliative-focused care occurs abruptly. 1 Late or no palliative care use is associated with more aggressive and costly end-of life care. 2 In Alberta, 60% of patients with metastatic gastrointestinal cancers had a late (within 2 months of death) or no palliative care referral. 3,4 This was associated with aggressive care in 50% of those patients, as compared to 25% in those who received early palliative care. Choosing Wisely Canada, 5 the American Society of Clinical Oncology (ASCO), 6,7 and other guidelines  all recommend that palliative care should not be delayed or avoided in patients with metastatic cancer who are also pursuing disease-directed treatment. Additionally, the Accreditation Canada standards include a recommendation for "a process for initiating palliative and end of life care" (/). There is extensive evidence that integrating an early palliative approach with cancer care improves outcomes for patients with advanced cancer.  This approach has been described by Temel's five elements of an early palliative approach to care, 13 Hannon's elements of early palliative care, 20 and Boucher's best supportive care checklist. 21 Improved methods of tracking and addressing symptoms are associated with less emergency room usage and improved quality of life and survival. 22 Refer to the accompanying Evidence Table for a comprehensive review of the literature.

# Definitions
To create clarity around the concepts in this guideline, the following definitions are provided:

# How is advanced cancer defined?
Advanced cancer is defined as those with distant metastases, late-stage disease, cancer that is life limiting, and/or with prognosis of 6 to 24 months. 6 Advanced colorectal cancer is generally not amenable to surgical resection of all sites of disease, and usually represents an incurable situation. As a small number of advanced colorectal cancer patients may achieve prolonged remission or cure, the potential for cure is not an exclusion for use of this guideline.

# What is the palliative approach to care?
Palliative care is defined by the World Health Organization as "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. Palliative care:
- provides relief from pain and other distressing symptoms.
Guideline Resource Unit
- affirms life and regards dying as a normal process.
- intends neither to hasten or 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." 23 In brief, the palliative approach to care includes whole person care, quality-of-life focus, and mortality acknowledgement. 24 3. When is palliative care defined as "early"?
Early palliative care starts close to the initial diagnosis of advanced cancer, specifically the "Integration of palliative care into standard oncology care: ASCO clinical practice guideline update" suggests within 8 weeks of diagnosis. 6 Palliative care continues as an added layer of support throughout a disease trajectory, including concurrently with cancer modifying therapy (e.g., chemotherapy), or when patients choose to not have cancer modifying therapy, or when there are no cancer modifying options available. Palliative therapy options may include best supportive care, radiation, surgical or systemic therapy.
Figure 1 shows how the early palliative care pathway is intended to be used in conjunction with the CancerControl Alberta Metastatic Colorectal Cancer Guideline and forms a continuum of care with other guidelines and pathways. Guideline Resource Unit 1) CancerControl Alberta guidelines for diagnosis and treatment of early stage colon cancer and early stage rectal cancer. 2) Metastatic colorectal cancer guideline. 3) Integrating an early palliative approach into advanced colorectal cancer care. 4) Acknowledging the prognostic uncertainty and the possibility that either disease progression to death or prolonged remission are potential outcomes when entering each of the pathways. While there are no CancerControl Alberta guidelines for this final box, there are Alberta Health Services (AHS) resources for both end of life care and prolonged remission/survival.

# Who provides the palliative approach to care?
The Canadian Society of Palliative Care Physicians identifies that a palliative approach "specifically acknowledges the capability of health care professionals who do not specialize in palliative care to attend to the needs of people who have advancing serious illnesses, regardless of the sector of care (e.g., home care, residential, hospital) and the stage the patient is at in the disease trajectory." 25 In Alberta, the Palliative and End of Life Care (PEOLC) Alberta Provincial Framework 26 outlines three levels of palliative and end of life care provincially accessible to patients and families/caregivers a :
- Primary Level: All health care providers should have primary palliative care basic core competencies, and this approach to care should be available in all care settings. 26,27 Care is delivered by interdisciplinary primary care providers (e.g., oncology, family practice teams, urban integrated home care), which provide "clinical management and care co-ordination, including assessments, interventions, referrals and triage". Providers manage psychosocial, physical and spiritual aspects of care along with communication (e.g., discussion of prognosis, Advance Care Planning, initial management of symptoms). Clinicians may utilize secondary and tertiary palliative care services through consultative processes to further support patients and their families. - Secondary Level: Secondary palliative care provides specialized palliative care consultation, advice, and services to primary providers, their patients and families. 26 This includes care in various and specialized settings, such as the patient's home, long term care, and hospice. Secondary palliative care providers (e.g., palliative care consultants) give advice and support in an interdisciplinary team setting. Not all patients with palliative care needs will require secondary level of care. - Tertiary Level: Tertiary palliative care is delivered by specialized interdisciplinary palliative care teams for complex cases, symptom management, or psychosocial concerns not responding to interventions. 26,28,29 This level of care is supported by tertiary resources, for example, interventional procedures, diagnostics, in-patient palliative care units and frequent skilled assessments.
a Family/caregiver is defined in this guideline as inclusive of those the patient self-identifies as family (biological and family of choice) and any caregivers (outside of the health system including legally appointed and patient selected).
Guideline Resource Unit

# What is meant by integrated?
There are many definitions of integrated care. 30 In this guideline, integrated care is understood as care that combines a palliative approach to care with disease-specific management, in a collaborative, coordinated and flexible manner dependent on a person's and family/caregiver's range of needs. 27 Guideline Goal
To improve the quality of life for people affected by advanced colorectal cancer by integrating an early palliative care approach into advanced cancer care.
Guideline Questions 1. What triggers should be used to indicate the need to apply an early, integrated palliative approach to care? 2. What are the essential components of an early palliative approach to care? 3. How can these components be integrated into advanced colorectal cancer care?

# Search Strategy
This guideline was developed to outline the integrated early palliative approach to care recommendations for patients with advanced colorectal cancer. It was informed by the results of randomized controlled trials and systematic reviews up to 2018 (see Evidence Table ). It takes into consideration related information presented at local, national, and international meetings, as well as the Alberta Provincial Gastrointestinal and Palliative Care Tumour Teams' interpretation of the data. This guideline was informed from the following clinical practice guidelines:
- Cancer Care Ontario, based on the Gold Standards Framework 31 - Accreditation Canada (/) - British Columbia clinical practice guidelines and protocols (BCGuidelines.ca)

# Target Population
The recommendations outlined in this guideline apply to adults over the age of 18 years with advanced colorectal cancer. Different principles may apply to pediatric patients.

# Discussion
This guideline has been summarized in the "Integrating an Early Palliative Approach into Advanced Colorectal Cancer Care Pathway" (www.ahs.ca/GURU under "Gastrointestinal" heading then "Metastatic Colorectal Cancer: Early Palliative Approach" and select "Interactive Care Pathway").

# Guideline Resource Unit

# What are the Essential Components of an Early Palliative Approach to Care?
Several recent analyses of trials integrating oncology and palliative care point towards specific key elements of an early palliative care approach that support whole person care, quality-of-life focus, and mortality acknowledgement. 6,13,21,32 In Alberta, these have been synthesized into four components, as shown in Figure 2. Figure 2. Four essential components of an early palliative approach to care.

# What is Illness Comprehension & Coping?
Illness comprehension is the extent to which the person understands and internalizes the scope of their illness including prognosis, treatment and care options. It is a complex psychological construct that is dynamic and is interrelated with illness adjustment and coping. 33 

# What is Advance Care Planning?
Advance care planning (ACP) is a process that supports adults at any age or stage of health in understanding and sharing their personal values, life goals, and preferences regarding future medical care. The goal of ACP is to help ensure that people receive medical care that is consistent with their values, goals and preferences during serious and chronic illness. 34 ACP is not the same as Goals of Care Designation (GCD) determination. In Alberta, the ACP process is aimed at all adults and includes five elements that a person undertakes: Guideline Resource Unit
- Think about: Thinking about their own values related to their health and well-being.
- Learn: Learning about their health or illness conditions, including prognosis and the kind of decisions they might be faced with in the future. - Choose: Choosing an alternate decision maker (ADM) in the event they lose capacity for decision making. - Communicate: Communicating with their ADM, other family or people close to them and with their health care provider about who their chosen ADM is and the kind of wishes and values they would like to guide their care in the event they lose capacity. - Document: Documenting in a Personal Directive to legally appoint their agent (ADM) for personal decision making in the event they lose capacity. The Personal Directive also allows a person to document those wishes, beliefs and values that they want the agent to understand when making decisions about their personal matters.

# What is Coordination of Care?
The definition is malleable based on perspective. The Agency for Healthcare Research and Quality uses the following working definition: "care coordination is the deliberate organization of patient care activities between two or more participants (including the patient) involved in a patient's care to facilitate the appropriate delivery of health care services. Organizing care involves the marshalling of personnel and other resources needed to carry out all required patient care activities and is often managed by the exchange of information among participants responsible for different aspects of care." 35 The five key elements comprising care coordination are: a) numerous health care providers are involved; b) providers are dependent upon each other to carry out separate activities in a patient's care; c) each provider needs adequate knowledge about their own and others' roles, and available resources; d) providers rely on exchange of information; and e) integration of care activities has the goal of facilitating appropriate delivery of health care services. As complexity increases, the patient's ability to coordinate care themselves decreases and the need for participatory provider coordination increases.

# Recommendations and Implementation Strategy
Step 1: SCREENING Clinicians caring for patients with advanced cancer should use the following opportunities to screen for those who may benefit from an early, integrated palliative approach to care:
- During assessment for symptom burden (physical and psychosocial) 2. With transition points in care or indication of advanced disease trajectory 3. When patient or family/caregiver asks for palliative or supportive care 4. Clinician judgement

# Guideline Resource Unit
All advanced colorectal cancer patients should be screened to identify those who may benefit from an early palliative approach to care on a systematic basis. 36 Opportunities for screening include:

# Symptom burden and patient concerns:
- Review symptom burden in combination with the Edmonton Symptom Assessment System Revised (ESAS-r) scores. 37,38 A score  7/10 on the ESAS-r is considered severe. 36,39,40 ESAS-r data are available for Alberta patients from the "Putting Patients First" (PPF) form (Appendix 1). - Utilize the CancerControl Alberta Patient Reported Outcome (PRO) dashboards proactively.
The PRO Clinic List dashboard shows the symptom burden of all patients booked into a clinic. It highlights which patients had high symptom burden on their last visit, for review in the current visit. The Clinic List has a direct link to each patient's individual PRO trended dashboard where the clinician can view each patient's symptom trajectory (PPF data from ESAS-r and Canadian Problem Checklist (CPC) responses) over the last 6 visits in more detail (Appendix 2). This is an Alberta specific method in cancer centres entering PPF data into the electronic medical record.

# Monitoring for transition points in care or indicators of advanced disease trajectory:
- Progression on current therapy.
- When disease is recognized as incurable.
- When on second-line systemic therapy. 41,42 - There are no further disease-modifying treatments available.
- When unable to receive first-line systemic therapy, or patient declines further diseasemodifying treatment. - There is a decrease in performance status or functional decline (e.g., the patient is confined to bed or chair more than 50% of waking hours). (ECOG  3, Appendix 3) - When the clinician estimates the patient's prognosis as 12 months or less. One way this can be achieved is by clinicians asking themselves the Surprise Question: "Would I be surprised if the patient were to die in the next 12 months?" An answer of no indicates a higher likelihood of death within the next year. 31,43,44 - When a patient with incurable cancer is discharged from the cancer centre for ongoing care in the community.

# When patient or family/caregiver requests palliative care services or information.
1.4 When clinician judgement determines the patient or family/caregiver would benefit from an early palliative approach to care:
- Patient and/or family/caregiver are having (or anticipating) difficulties with illness understanding, including naming the diagnosis, illness history, symptoms, causality and prognosis, ACP, mortality distress. 45 Patients who screen positive for one or more of these screening methods meet criteria for use of an early integrated palliative approach to care. Patients who screen negative should be rescreened regularly.
Once screened and meeting criteria, routinely and systematically identify the patient's unmet needs and functional status. This is a critical step to determine the most appropriate supportive care interventions and service type needed. Evidence points to the need to use an assessment tool systematically, in order to not miss suffering. 22,46 Assessment tools allow identification of the specific issues of concern to the patient and family/caregiver. Randomized controlled trials (RCTs) demonstrate that intentional monitoring and addressing of symptoms and problems as identified by patients is helpful in maintaining quality of life and possibly associated with increased survival. 13,22,46,47 There is limited high grade evidence to guide which exact assessment tools to use. 48 We recommend the use of CancerControl Alberta's standardized tools to assess patient needs (Table 1). 49 The frequency of reassessment of need varies between the RCTs, but all agree that "routine" monitoring is needed. Thus, we recommend assessment of patient needs at most clinical encounters. Note that clinical encounters can be initiated by patients (e.g., patient portal entered symptom scores or phone calls to clinics regarding worsening symptoms). Step 2: IDENTIFY PATIENT NEEDS Once patients have been screened and meet criteria, clinicians should identify unmet patient needs. This can be guided by the four essential components of an early palliative approach to care (Figure 2) and corresponding assessment tools (Table 1). Patient needs should be reassessed at regular intervals.
Guideline Resource Unit

# Putting Patients First (PPF)
The PPF tool includes the CPC and the ESAS-r and has been adopted as a provincial standard in Alberta. 49 The CPC was developed by the Screening for Distress Working Group of the Canadian Partnership Against Cancer; 50 it is a comprehensive standardized tool for assessment that has been validated for screening for distress and encapsulates domains relevant to many of the early palliative care intervention studies. 13 Assessment domains include: emotional, social/ family/ spiritual, practical, physical, mobility, nutritional, informational and the option to include open ended "other" concerns.
The ESAS-r is an internationally validated tool to assess patient symptoms. 37,38

# Serious Illness Care Program (SICP)
Beyond the CPC, there are more in-depth methods to assess illness understanding and coping. One of these is the SICP (Appendix 4), which also elicits patient values as a part of ACP. 51 Refer to section 3.3 for more detail.

# Eastern Cooperative Oncology Group (ECOG) and Palliative Performance Scale (PPS)
There are many ways to assess functional status and needs. 52 The ECOG (Appendix 3) functional scale can indicate declining function that might be associated with increasing patient needs. The ECOG score might suggest both the level (e.g. ambulatory, home care, supportive living) and type of supports (e.g., mobility aids, hospital bed, toileting assistance) needed by the patient. 53 The PPS is the standard tool used in palliative care to measure performance status using five observable parameters: ambulation, ability to do activities, self-care, food/fluid intake, and consciousness level (Appendix 4). 54 Similar to ECOG, the PPS can indicate the need for additional support including hospice care.

# Advance Care Planning/Goals of Care Designation (ACP/GCD) Tracking Record
Existing literature has several methods for assessing the degree to which a patient has engaged in prior ACP or their preferences related to decision-making. 34 The PPF tool includes the items "Would you like information on Goals of Care or advance care planning (green sleeve)?", "Understanding my illness and/or treatment", "Talking with my health care team" and "Making treatment decisions", which allow patients to indicate their self-perceived need for more information related to ACP. In Alberta, the ACP/GCD Tracking Record also provides prompts for clinicians, with five suggested questions to assess prior ACP activities, and is the document in use provincially to record patient needs related to ACP (Appendix 5). The SICP also guides clinicians to elicit a patient's informational needs related to their prognosis, "How much information about what is likely to come with your illness would you like from me?" 51

# Coordination of Care
Patients with cancer are at high risk of receiving poorly coordinated care in multiple settings from many providers, and lack of coordination is associated with poor symptom control, medical errors, and higher costs, 2,55 Improvement in cancer care coordination leads to better patient experience and higher quality of end of life care. 55,56 Many factors impact patient complexity, including personal factors (e.g., social determinants of health), interactions with providers (e.g., no family physician), Guideline Resource Unit system complexities (e.g., rural location), societal influences, and changes over time. 57 Care coordination needs tend to increase with complexity. It is important to assess care coordination needs (e.g., patient and family/caregiver factors, number of providers, complexity of treatment plan), however there is limited evidence to recommend one assessment tool over another. 58 Practical concerns identified on the PPF may indicate higher needs around care coordination for issues such as financial concerns, difficulty getting to and from appointments, and language barriers.
Primary providers should initiate management of unmet needs. 26 Defining which care provider is primarily responsible and whether they refer to additional care providers for support and interventions can be dependent on both the referring clinicians' own competencies in managing the issue and on the locally available consultation services.

# Illness Comprehension and Coping
Evidence has shown that addressing a patient's understanding of their illness, how they are coping and how those close to them are coping, is associated with improved patient outcomes. 12,32,45,51,59,60 In addition to consulting secondary palliative care providers, Table 2 shows some other methods that can be used to support patients and family/caregivers. Step 3: PRIMARY PROVIDER MANAGEMENT OF UNMET NEEDS Primary palliative care management of unmet patient needs is strongly recommended using the four essential components of an early palliative approach to care as a guide:
- Illness comprehension and coping 2. Management of symptoms by providers and patients' self-management 3. Advance care planning and patient's preferred method of decision making 4. Coordination of care Patient preference, available time and clinician skills may be factors in the extent to which exploring patient illness understanding and coping occurs during clinical encounters, and clinician judgment is required about whether and when to refer for additional formal coping supports. This guideline encourages primary providers to explore and identify techniques to use in their practice.

# Management of Symptoms by Providers and Patients
Providers: Management of symptoms is a cornerstone of palliative care. 23 Symptoms may be managed pharmacologically (e.g. steroids, opioids), non-pharmacologically (e.g., behaviour modification, meditation), and/or by physical interventions (e.g., stents, palliative surgery, radiation). Conversations Cancer Consult Recording App with the aim of improving their recall of key conversations and enhancing their self-management and ease of decision-making. More information is at www.ahs.ca and search "My Care Conversations Cancer Consult Recording App" or visit: .

# ACP and Patient's Preferred Method of Decision Making
By preparing patients and those who may have to make in-the-moment decisions on their behalf, ACP is associated with a number of benefits. 64 Choosing Wisely Canada recommends "don't delay advance care planning conversations". The AHS procedure on ACP and GCD states, "all adults who have capacity should be given the opportunity to participate in ACP as a part of routine care, started early in a longitudinal relationship with a health care provider and revisited when the health or wishes of an adult changes". 65,66 Encourage patients to have conversations about ACP throughout cancer treatment. Clinicians, within their scope of practice, can be instrumental in:
- Encouraging reflection on and expression of personal values, beliefs and preferences related to personal goals, health care and their preferred method of decision making (e.g., shared decision making, supported decision making with family/caregiver, self-determined, physiciandirected).
- Sharing prognostic information, tailored to the patient's readiness and preferences around illness understanding. - Supporting the patient in selecting an appropriate ADM.
- Encouraging the patient to communicate with their ADM, family/caregivers, other health care team members about their values, beliefs and preferences and who they have selected as ADM.
- Encouraging the patient to create a Personal Directive.
- Documenting ACP conversations on the ACP/GCD Tracking Record.
Resources: Patient and health care provider resources are available at www.conversationsmatter.ca.
The SICP was developed in a cancer outpatient clinical context to provide a systematic approach to increasing meaningful conversations between seriously ill people and their clinicians about their values and priorities. 51 It has been adapted for use in family physician clinics and other settings 67 and is in an early phase of adoption within AHS. This is a helpful bridging process between ACP and GCD determination, as shown in Figure 3. 65,66 In Alberta, Goals of Care Designations (GCD) are medical orders that describe the general and sometimes specific focus of a patient's desired care approach, harmonized with what is medically appropriate to provide. They also create awareness of a person's care choices in relation to the care sector they are living in or being cared for. They ideally arise from fully informed conversations between patients (or their alternate decision-maker) and health care providers. The use of GCD is described in an AHS level 1 provincial policy and procedure. GCD should be determined when clinically indicated and should be reviewed at the request of the patient or ADM, after transfers, or if there is a significant change in the patient's condition or circumstances.

# Goals of Care Designations:
GCD are a useful component of an early palliative approach to care because they are a mechanism that "helps make our system more patient-centred, improves continuity of care, supports care quality and safety for patients, reduces unwanted transfers and procedures, reduces decisional burden and moral distress for families and caregivers, and helps prevent inappropriate consumption of resources." Per AHS, "once a Goals of Care Designation conversation has been held, and if clinically indicated, a Goals of Care Designation order shall be created and documented in the Advance Care Planning/Goals of Care Designation Tracking Record." By documenting in a common place, follow up can be shared between the care team. The Green Sleeve is a plastic pocket used in Alberta as the specific resource to contain and transfer ACP documentation (e.g., GCD order, Advance Care Planning/Goals of Care Designation Tracking Record, Personal Directive copies, Guardianship Orders). 

# Guideline Resource Unit

# Coordination of Care
Coordination of care is usually the responsibility of all health care providers. The important coordination activities are: 35 - Establish accountability or negotiate responsibility - Communicate - Facilitate transitions - Create a proactive plan of care - Support self-management goals - Link to community resources - Align resources with patient and population needs - Monitor, follow up, and respond to change In certain zones this coordination might be achieved through a patient navigator and/or home care case manager. These coordinators are particularly valued by rural zone patients. 63 Advanced Cancer Resources: To assist health care providers in coordination activities, compilations of advanced cancer resources are available. These Zone-specific tips are being made in collaboration with local palliative programs as "Local Tips for Providers":
- Calgary (www.ahs.ca/GURU > Guidelines > Gastrointestinal > Metastatic Colorectal Cancer:
Early Palliative Approach > "Local Tips For Providers"). Includes information on caregiver support and community based resources, and these provincially funded programs Referral Based Services for Advanced Cancer Care: Lack of provider role clarity and variation in service availability, along with variation in patient need (i.e. functional and ambulatory status), can make it challenging to identify when and which specialist palliative care or other supportive care services are needed. Relevant supportive services that may assist in fulfilling an early palliative approach to care include: integrated home care, EMS Assess Treat and Refer program, community paramedic program, psychosocial oncology, and rehabilitation oncology. See "Referral Based Services for Advanced Cancer Care" document for provider types available, their description and referral criteria. Note that the Alberta Referral Directory (ARD) is the centralized location for referral information. More resources for improving referrals and access to services can be found at "Access Improvement" ().
Specialist Palliative Care Services: Specialist palliative care services provide secondary or tertiary advice or care when needs of the patient are complex and beyond the scope of the primary care team. 25 The palliative consultant can also support the primary care team in providing a primary palliative approach to care. Quality indicators suggest that palliative-focused home care nursing support is an important element in improving quality of care and reducing inappropriate use of resources. 3,68,69 When providers are making referrals to palliative care services, clarification should be provided to the patient explaining that palliative care is an added layer of support that can be used alongside cancer treatments. 70 Patient friendly palliative care descriptions are available in the CancerControl Alberta patient education guides (see Section 3.2). Some examples of when referral to specialist palliative care would be appropriate are:
- severe symptoms ( 7 ESAS-r). Note clinician judgement is required as patients with severe psychosocial-related symptoms (e.g., depression and anxiety) might instead need a referral to psychosocial oncology providers. - palliative care unit or hospice referral.
- assisting with conflict resolution or health care decision making.
- clarification of goals of treatment or management plan.

# Communication and Documentation:
Standardized communication increases consistency, minimizes duplication and improves teamwork while promoting patient safety. All providers involved in the patient's care should send updates to other providers when there are changes in the patient's condition, needs, or status. Important elements include patient's cancer illness understanding, prognosis, and details of ACP and GCD (Green Sleeve). Effective communication reduces the need for patients and families to repeat information. Patients and families need information to prepare for and improve care transitions; this may include written information or instructions, action plans, goals, signs or symptoms of declining health status, and contact information for the team. Family physicians also want to be kept informed and involved. 71 

# Guideline Resource Unit
The following communication tools should be used to enable standardized communication:
- Shared care letters: At transition points in care, communication between the cancer centre and family physician should be emphasized by use of a "Shared Care" letter. The physician version of the letter outlines collaborative care where primary palliative care and symptom management can be shared between providers. It indicates cancer modifying care to be managed by medical oncology and non-cancer related care to be managed by family physician. This letter is initiated when second-line therapy is ordered or patient is determined to have advanced disease. The patient version of the letter should be given to the patient during the clinic visit. - Green Sleeve: The Green Sleeve is a plastic pocket used in Alberta as the specific resource to contain and transfer ACP documentation (e.g., GCD order, ACP/GCD Tracking Record, Personal Directive copies, Guardianship Orders).
At any point after a cancer diagnosis and often as cancer progresses, patients and their families/ caregivers may have questions, worries or preferences about dying, death or preparation for after death. Clinicians are a valued source of information or guidance about end of life topics and can help ensure that key activities, like preparing a will or addressing guardianship issues for dependents, have been addressed. Topics that people may want to inquire about include:
- How to recognize when death is near and what dying may look like, including modes of death e.g. "natural death", palliative sedation for intractable symptom issues in final hours or days, death during resuscitation or medical management in hospital, or MAID. - How to proactively anticipate and manage changing needs (e.g., if a patient is likely to lose the ability to take oral medication or become bed bound). - Possible care locations before death (home, care facility, hospice, hospital).
Managing existential distress, death anxiety and changes in personal role or close relationships may involve the supports outlined in section 3.1; other topics in end of life care are listed below.

# End of Life Planning
- Review ACP discussions and patient preferences for care at end of life. - Determine the most appropriate GCD that reflects the person's values and clinical context.
- Revisit caregiver supports.
- Ensure patient is on Alberta Health Palliative Coverage Program (also known as "Palliative Blue Cross" or "Palliative Drug Coverage"). - Discuss possible and preferred location(s) of care towards end of life (e.g., home, hospice, hospital, or other facility). o Develop a plan for expected death in the community if patient would like to remain at home:  AHS expected death in the home toolkit can be found on Insite or at   Resources that help prepare for death can be found on Insite by searching "Care before death" or "What to expect when a loved one is dying" o For information on "Care after death" in acute care visit 

# Estate and Funeral Planning
Remind patients and their family/caregivers to begin this planning early on. For example, a will and financial enduring power of attorney are part of estate planning. Assist them to connect to the appropriate resources to fulfill this planning, such as social work or their lawyer.

# Hospice Access
Hospice care is a specialized service available in certain locations that provides 24/7 facility-based palliative care to those who are approaching end of life and whose needs cannot be met at home/other location. There are highly specific criteria for referral to hospice and access is determined by secondary palliative care clinicians. See the "Referral Based Services for Advanced Cancer Care" document and/or talk to your local palliative care clinician about whether hospice may be appropriate for a specific patient and family/caregiver.

# Medical Assistance in Dying (MAID)
AHS has developed the MAID policy to guide medical assistance in dying services. This policy is posted on the AHS Medical Assistance in Dying website and available from the Care Coordination Service upon request. A physician FAQ sheet is available.

# Grief and Bereavement
Ask patients about their emotional supports and let patients and caregivers know that grief and bereavement resources are available both before and after death. Most services are accessed by self-referral and clinicians can help by providing the access information. See "Referral Based Services for Advanced Cancer Care" document for grief and bereavement resources.
Guideline Resource Unit

# Clinic List Report:
This report can be generated for any clinic in CancerControl Alberta (CCA) based on location, date and provider, and is intended to support clinic preparation or team huddle prior to the start of clinic.
It pulls all information from ARIA (CancerControl Alberta's EMR) about the clinic including notes entered by clinicians regarding a patient's next visit, as well as the symptom burden the patient reported on their last PRO symptom screen (Putting Patients First form), along with when that screen was filled out, and other relevant information re: goals of care and % weight change in the last 3 months.
Clinicians can easily click on the patient name or ACB# to link to each individual's Trended PRO Dashboard.
This report can be generated for any patient in CancerControl Alberta (CCA) who has completed a Putting Patients First (PPF) form and the staff have entered it as part of the clinical documentation. It is intended to support both the patient and the provider team to visualize the patient's symptom burden over time and to highlight areas of high symptom burden. It also links clinical response and referrals made to each clinical visit/PRO report.
It pulls all info from ARIA (CancerControl Alberta's EMR) entered by clinicians regarding all previous visits. Patients get a "patient friendly" simplified version when they check in for their visit as a reference for when they fill in today's "Symptom Tracking Report" (which we refer to as the Putting Patient's First form).
For access to this report, contact EBI.program@ahs.ca. 

# Development and Revision History
This guideline was reviewed and endorsed by the Alberta Provincial Gastrointestinal and Palliative Care Tumour Teams. Members of the Alberta Provincial Gastrointestinal and Palliative Care Tumour Teams include: medical oncologists, radiation oncologists, palliative care consultants, surgical oncologists, family physicians, allied health professionals, nurse practitioners, registered nurses, and patient and family advisors. Evidence was selected and reviewed by a working group comprised of members from the Alberta Provincial Gastrointestinal and Palliative Care Tumour Teams and a knowledge management specialist from the Guideline Resource Unit. A detailed description of the methodology followed during the guideline development process can be found in the Guideline Resource Unit Handbook.
This guideline was originally developed in October, 2018 and underwent revisions in July 2019.

# Maintenance
A formal review of the guideline will be conducted in 2022. If critical new evidence is brought forward before that time, however, the guideline working group members will revise and update the document accordingly. 

# Abbreviations