Palliative Care for the Patient with Incurable Cancer or Advanced Disease - Part 1: Approach to Care
Effective Date: June 15, 2010
Summary
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Flow Sheet
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Patient Guide
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Full Guideline in PDF
Palliative Care Part 2: Pain and Symptom Management is available at www.bcguidelines.ca/guideline_palliative2.html
Palliative Care Part 3: Grief and Bereavement is available at www.bcguidelines.ca/guideline_palliative3.html
Recommendations and Topics
Scope
This guideline presents assessment and management strategies for primary care practitioners caring for adult patients (≥ 19 years) with incurable cancers 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
- At the transition when end of life care may be needed
Diagnostic Code: 239 (neoplasm of unspecified nature)
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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.
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Assessment
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.
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 Appendix A)
- dyspnea
- dysphagia
- cognitive impairment
Investigations (Refer Appendix B)
Before ordering investigations, ensure that the results will change management to improve quality of life and/or prognostication, consistent with a patient's goals of care. Investigations may be indicated in the following situations 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.
Management
Evaluate performance status and then symptom burden in order to accurately assess a patient's needs for added supports and symptom management. A common use of assessment scales among providers (e.g. PPS, Edmonton Symptom Assessment System [ESAS]) facilitates communication and collaboration.
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Monitor patient's functional capacity.
Use the PPS (refer Appendix A) 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 3 months or less".1
- Co-ordinate care with allied health care providers.
To enhance co-ordination with allied health providers involved in the care of the patient, the following are recommended:
- Application of the PPS to determine a need for increased patient support:
- For a drop from PPS 70% to 60%, refer to the hospice palliative care program (submit a Palliative Benefits Application for prognoses ≤ 6 months and discuss and/or complete a home No CPR form (refer Resources)).
- For a drop from PPS 40% to 30%, increase home support or hospice care.
- For a PPS of 20% or 10%, use the End of Life (EOL) Care check list (found on page 4).
- A bereavement follow-up call and/or visit by a physician, a suitable allied health professional, or a trained hospice volunteer.
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Evaluate symptom burden.
Use a scale like the ESAS (refer Appendix C) to assess symptom management. The ESAS may be provided to the patient to complete while in the reception area. 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 ESAS symptom scores, using pain as an example, a useful frame of reference is:2
•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 family member) is advisable.
- Determine the patient's understanding of the disease and condition.
- Discuss the anticipated course of illness, treatment choices, and options in relation to a patient's preferences, needs, and expectations.
- Document advance care planning discussions and the existence of any Advance Directive/ Representation Agreement. Document whether the No CPR +/- Planned Home Death forms are completed (refer Resources Section).
- Identify and appoint a legal substitute decision maker, ideally a person familiar with the patient's preferences and able to make informed choices.
- Establish plans for key decisions for acute episodes, crisis events, and declining function in relation to life-sustaining therapies and hospitalizations, considering all co-morbidities.
- Clarify the patient's preferred place of care.
- Establish caregiver's ability to provide care at home if that is the patient's preference.
- Review both 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.3
- Nutrition: Nutritional needs are different for patients with cancer, i.e. appetite is often reduced and forcing additional food may contribute to nausea or vomiting. When the goal is life prolongation, a consultation with a dietician 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 patient and caregiver.
- Family support:
- Caregivers who take time off work can apply for the Employment Insurance (EI) Compassionate Care Benefit (refer Resource Section).
- Application can be made to the Palliative Benefits Program when a patient's life expectancy is estimated to be ≤ 6 months (refer Resource Section).
- Completing the "Notification of Expected Death in the Home" form means families can avoid waiting for a physician to pronounce death.
- Patient self management (refer Patient Information and Resource Sheet)
- 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 Section).
- 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 flowsheets to record break-through 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 Patient Information and Resource sheet).
- 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.
See "Palliative Care Guideline Part 2: Pain and Symptom Management".
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Referral to a specialist (refer Appendix D).
- Indications for referral to a tertiary palliative care unit.
- Control of pain and other symptoms when these cannot be met in the community.
- Support for severe psychological, spiritual, or social distress.
- Ongoing care.
- Allied health care and referral to the local hospice palliative care program.
- High quality palliative care is generally provided via a team approach and GPs are important team members as they often have good relationships with patients and families and the knowledge and expertise to co-ordinate and provide care for the whole patient. Team members may include medical specialists, advanced practice nurses, home care nurses, social workers, case managers, pharmacists, occupational therapists, physiotherapists, dieticians, spiritual care workers, hospice volunteers, and home support workers.
- Patients are often best educated by allied health providers when it comes to topics such as myths about opioids, proper use of breakthrough medications, managing side effects, accessing help after hours, how to plan a home death, etc.
- Refer to the local hospice palliative care program early in the illness trajectory so patients and their families can learn what home supports are available before they are required.
- Actively dying: The End of Life (EOL) Care check list.
Points to consider when patients enter the dying phase:
- Review a patient's goals of care, preferred place of care, what to do in an emergency.
- Refer to home nursing if not already arranged.
- Ensure that the required forms are completed (No CPR and/or Planned Home Death).
- 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 Appendix F).
- 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).
- Bereavement (see "Palliative Care Guideline Part 3: Grief and Bereavement").
It is important to predict and be prepared to manage complex grief, of which 3 types have been determined:
| Complexity |
Comments |
| Non complex |
Usual care would be follow-up after death and at 6 and 12 months. |
| Middle complexity |
More time and support is required (e.g., children of a dying parent). |
| Very complicated |
Characterized by bizarre grieving (includes people with mental illness). |
Follow-up is important, but recognition of and preparation for complex grieving optimally takes place before death occurs.
Rationale
Patients diagnosed with incurable cancer may not identify themselves as requiring palliative care. A palliative approach addresses the needs for pain and symptom management, and psychosocial and spiritual support of patients and their families, even if they chose to undergo life-prolonging chemotherapy, radiotherapy, and/or surgery. A proactive chronic disease management approach will help prevent care gaps that may occur during transitions in the cancer journey and/or when the patient is not supported by a cancer agency or community hospice palliative care program.
References
(These references were chosen to be helpful and do not form an exhaustive list.)
- Royal College of General Practitioners. The gold standards framework. Prognostic indicator guidance to aid identification of adult patients with advanced disease, in the last months/ year of life, who are in need of supportive and palliative care. Version 2.25 c2006. [cited 2010 March 22]. Available from http://www.healthcareforlondon.nhs.uk/assets/End-of-life-care/Prognostic-Indicator-Guide-2008.pdf
- Lynn J, Schuster J, Wilkinson A, et al. Improving care for the end of life: a sourcebook for health care managers and clinicians. Oxford University Press. 2008.
- Cramp F, Daniel J. Exercise for the management of cancer-related fatigue in adults. [Cochrane Review]. In: The Cochrane Library, Issue 2, 2008.
Resources
BC EOL Care:
http://www.health.gov.bc.ca/hcc/endoflife.html
BC Palliative Care Benefits Program Application form:
https://www.health.gov.bc.ca/exforms/pharmacare/349.pdf
BC Palliative Care Benefits Program Physician Guide:
http://www.health.gov.bc.ca/pharmacare/outgoing/palliative-physguide.pdf
BC Pharmacare Special Authorities Branch: 1-877-657-1188, fax: 1-250-405-3587
BC Provincial Palliative Care Consult Line (available for physicians only 24/7): 1-877-711-5757
BCCA Pain and Symptom Management Clinics at each of 5 regional cancer centres:
http://www.bccancer.bc.ca/PPI/InfoforNewPatients/CancerCentres.htm
Fraser Health Hospice Palliative Care Symptom Guidelines:
http://www.fraserhealth.ca/professionals/resources/hospice_palliative_care/
hospice_palliative_care_symptom_guidelines
Gold Standards Framework:
http://www.goldstandardsframework.nhs.uk/
My Voice Advance Care Plan booklet:
http://www.fraserhealth.ca/your_care/planning_for_your_care/workbook
No CPR Form:
https://www.health.gov.bc.ca/exforms/bcas/302.1fil.pdf
Notification of Expected Death in the Home form:
http://www.health.gov.bc.ca/hcc/pdf/expected_death.pdf
Palliative Care Integration Project:
http://meds.queensu.ca/palliativecare/assets/ccp_lite.pdf
Abbreviations
| CPR |
cardiopulmonary resuscitation |
CT |
computed tomography |
EI |
Employment Insurance |
ESAS |
Edmonton Symptom Assessment System |
MRI |
magnetic resonance imaging |
PPS |
Palliative Performance Scale |
SC |
subcutaneous |
SVC |
superior vena cava |
Appendices
Appendix A: Palliative Performance Scale (PPS) Including Instructions for Use
Appendix B: Possible Investigations and Interventions
Appendix C: Edmonton Symptom Assessment System (ESAS)
Appendix D: Indications for Referral to a Specialist
Appendix E: Cancer Management Flow Sheet
Appendix F: Contents of typical home drug kit & medications that may be given by SC route
This guideline is based on scientific evidence current as of the Effective Date.
The guideline was developed by the Family Practice Oncology Network and the Guidelines and Protocols Advisory Committee. The guideline was approved by the British Columbia Medical Association and adopted by the Medical Services Commission.
The principles of the Guidelines and Protocols Advisory Committee are to:
- encourage appropriate responses to common medical situations
- recommend actions that are sufficient and efficient, neither excessive nor deficient
- permit exceptions when justified by clinical circumstances.
Disclaimer The Clinical Practice Guidelines (the "Guidelines") have been developed by the Guidelines and Protocols Advisory Committee on behalf of the Medical Services Commission. The Guidelines are intended to give an understanding of a clinical problem and outline one or more preferred approaches to the investigation and management of the problem. The Guidelines are not intended as a substitute for the advice or professional judgment of a health care professional, nor are they intended to be the only approach to the management of clinical problems. We cannot respond to patients or patient advocates requesting advice on issues related to medical conditions. If you need medical advice, please contact a health care professional.
A mobile version of this and other guidelines is also available at www.BCGuidelines.ca
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