Care for the Patient with Incurable Cancer or Advanced Disease - Part 3: Grief and Bereavement
Effective Date: September 30, 2011
Full Guideline in PDF
Palliative Care Part 1: Approach to Care is available at www.bcguidelines.ca/guideline_palliative1.html
Palliative Care Part 2: Pain and Symptom Management is available at www.bcguidelines.ca/guideline_palliative2.html
Recommendations and Topics
This guideline addresses the needs of adult patients with incurable cancer or advanced disease (but can be useful for adults dying of any cause), as well as the needs of their caregivers or family, including children. Information and tools are provided to improve a primary care provider’s comfort and skills in dealing with this type of loss.
Diagnostic Code: 309 (adjustment reaction)
Working Definitions: Grief and bereavement are distinguished from each other, although bereavement includes many aspects of grief.
Grief: An expected response to loss
Anticipatory Grief: Response to anticipated losses
Complicated Grief: Occurs when there is a debilitating intensity or duration of ‘normal’ grief responses that adversely affect the ability to cope with normal life events.
Bereavement: The state where, following death, the family creates meaning and sense out of the new reality of life without their loved one/person who died.
A. Assessment of grief
- Consider using the distress screening tool (refer Appendix A - Screening Tools for Measuring Distress) to ascertain the degree of psychosocial, spiritual, and physical distress. This is best given to the patient to be filled out while waiting to be seen. Scores of 5+ on the distress thermometer are significant and the problem checklist provides valuable assessment information.
- Be aware of the potential desire for hastened death; if present, assess for suicide risk.
- Focus on personal strengths and coping mechanisms; what has worked in the past?
- Protective factors / resiliency for a patient or caregiver:
- Has an internalized belief in his / her own ability to cope effectively.
- Perceives the need for AND is willing to access social support.
- Is predisposed to a high level of optimism / positive state of mind.
- Has spiritual / religious beliefs that assist in coping with the death.
All of us grieve differently due to age, gender, personal, religious, and cultural differences; enquire regarding cultural and individual preferences (refer Appendix B - Cultural Diversity and Individual Preferences) and be aware of age differences (refer Appendix C - Children and Death).
B. Management of grief
TABLE 1: Non-pharmaceutical Management of Grief
Non-pharmacological management: the relationship between the physician and the patient is one of the most potent therapeutic tools for assisting patients who are dealing with grief. Reassurance about the normal pattern of grief and a commitment to supporting the patient in an ongoing way is the mainstay of care. It may involve a scheduled follow-up visit as necessary. Within that context, the following aspects of management should be considered.
|Acknowledgement of loss(es)
||Use whatever words are appropriate in the context of the relationship with the patient and family. Patient handout: Normal Manifestations of Grief (refer Appendix D).
- Normalize responses to loss, e.g., “you are not going crazy”.
- Discuss what to expect when grieving.
||Explore what is personally helpful to the patient, e.g., rest, exercise, social connections, spiritual support, home support, compassionate care benefits program.
||Patient handout: Normal Manifestations of Grief (refer Appendix D).
- Pharmacological management: In general, there is a limited place for pharmacological management in normal grief. The physician must be alert to the possibility of underlying disease and incipient pathologic grief and treat accordingly, but it is unwise to interrupt the normal constituents of grief such as depressed mood, anxiety, insomnia and anger.
- Other supports: Other support options are patient and caregiver support groups, on-line support groups, spiritual care and/or faith based communities, and hospice/palliative care programs including volunteer support. Refer for individual counselling when requested and appropriate.
Bereavement includes the period of adjustment following a person’s death and it encompasses many elements of grief, including complicated grief. Anticipate / screen for complicated grief reactions and also consider using the Bereavement Risk Assessment Tool (refer Appendix E) to assess risk.
A. Risk factors for complicated grief in bereavement
- Co-morbidities: mental illness; cognitive impairment; substance abuse.
- Concurrent stressors: multiple losses; significant other with life-threatening illness.
- Circumstances around the death: received as preventable; sudden, unexpected, traumatic or untimely.
- Lack of Supports: social isolation; disenfranchised grief; cultural or language barriers.
- Relationships: anger; ambivalence; resentment; insecurity.
B. Assessment of bereavement (Refer Appendix F – Bereavement Algorithm)
- The following tools may be useful in support of the ongoing physician patient relationship:
- Timing for assessment of caregivers for bereavement / grief
- Criteria for Diagnosing Complicated Grief
Yearning for the deceased must be experienced at least daily over the past month or to a distressing and disruptive degree, i.e., intense and intrusive thoughts, unusual sleep disturbance, suicidal ideation, and the persistence for at least six months of four of the following eight symptoms:
- difficulty moving on or reengaging with life
- numbness / detachment
- excessive bitterness or anger about the death
- feeling that life is empty
- a sense that the future holds no meaning without the deceased
- trouble accepting the death
- being on edge or agitated
- difficulty trusting others since the loss; social withdrawal
These symptoms can cause marked dysfunction in social, occupational, self care, or other important domains.
C. Management of bereavement (refer Appendix F - Bereavement Algorithm)
TABLE 2: Non-pharmacological Management of Bereavement
|At time of death (or ASAP there-after)
- Personally contact the bereaved person / family.
- Acknowledge the death and reactions including feelings such as guilt, relief, or shock.
- Ascertain and address immediate concerns about care, the death, or the funeral.
- Arrange for follow-up contact.
- Provide information about grief, i.e., what to expect and what is helpful (refer Appendix D - Normal Manifestations of Grief (Patient Handout).
- Provide information about local resources (e.g., bereavement groups, spiritual / religious supports, grief counsellors) and online resources (refer Appendix J - Grief and Bereavement Guideline Resource Links (Patient Handout)).
- Share Be Gentle with Yourself (Patient Handout - refer Appendix K).
|Ongoing care contact
- Within 2 weeks, acknowledge, or contact family.
- Contact again at 1-2 months, 6 months, and 11-12 months (anniversary of the death).
- Recognize that holidays, birthdays, and wedding anniversaries are tough.
- Be aware that the second year can also be difficult.
- Pharmacological Management
85% of grief in bereavement is normal grief, not requiring pharmacological management.1,2
TABLE 3: Pharmacological Management of Bereavement
- Benzodiazepines have a very limited role in the management of acute grief.
|Treating grief-related major depression: antidepressants
- Treat grief-related major depression once you are confident it is pathological.
- If depression is suspected while a person is acutely grieving, start by recommending regular exercise, counselling, and supports. If symptoms are worse or not improving by 8 weeks post-death, start antidepressant medication (refer Depression – Diagnosis and Management at BCGuidelines.ca).
|Treating complicated grief
- Assess in the context of the person’s life, personality, culture, and the nature of the illness/death.
- Refer to a bereavement counsellor, psychologist, or psychiatrist who will provide targeted psychotherapy, Complicated Grief Treatment (CGT), in addition to possible pharmacologic management.
Family physicians often feel unprepared and uncomfortable about knowing how to support those going through intense
grief. They may both mourn the death of their patient and the patient’s death may also trigger their own past grief.
Grief and bereavement services should be available to all patients and families based on assessed needs. Everyone
grieves losses, but it is important to recognize especially vulnerable groups such as the elderly, children, the socially
isolated, the mentally ill, the disenfranchised and culturally diverse groups such as new immigrants and the Aboriginal
It is not necessary to alter normal grieving, but it is helpful to provide a listening ear, to be supportive, and to provide
information. In the case of complicated grief, assess early and refer, realizing that a primary care provider needs to
continue to play a key role on the team.
“There’s no way around grief and loss: you can dodge all you want, but sooner or later you just have to go through it, and,
hopefully come out the other side. The world you find there will never be the same as the world you left.” – Johnny Cash
- Zhang B, El-Jawahri A, Prigerson H. Update on bereavement research: Evidence-based guidelines for the diagnosis and treatment of complicated bereavement. J Palliat Med. 2006;9(5):1188-1203.
- Zisook S, Shear K. Grief and bereavement: what psychiatrists need to know. World Psychiatry. 2009;8:67-74.
- National Consensus Project for Quality Palliative Care. Clinical practice guidelines for quality palliative care, 2nd edition [homepage on the Internet]. c2009. Available from: http://www.nationalconsensusproject.org/guideline.pdf
- Victoria Hospice Society, Cairns M, Thompson M, Wainwright W. Transitions in dying and bereavement: A psychosocial guide for hospice and palliative care. Baltimore: Health Professions Press; 2003.
- Downing GM, Wainwright W, editors. Medical care of the dying. 4th Edition. Victoria: Victoria Hospice Society, 2006; p. 641-668.
- Dyson T, Statton MA, Sutherland L. Psychosocial care. Hospice Palliative Care symptom guidelines. Fraser Health [homepage on the Internet]. c2009. Available from: www.fraserhealth.ca/media/psychosocial%20care.pdf
- Holland JC, Andersen B, Breitbart BS, et al. Distress management. J Natl Compr Canc Netw 2010;8:448-85. Available from: www.jnccn.org/content/8/4/448.full
- Kearney MK, Weininger RB, Vachon ML, et al. Self-care of physicians caring for patients at the end of life: “Being connected... a key to my survival”. JAMA. 2009;301(11):1156-64, E1.
- Prigerson HG, Jacobs SC. Perspectives on care at the close of life. Caring for bereaved patients: “all the doctors just suddenly go”. JAMA. 2001;286(11):1369-76.
- Ngo-Metzger Q, August KJ, Srinivasan M, et al. End-of-life care: guidelines for patient-centered communication. Am Fam Physician. 2008;77(2):167-74.
- Zhang B, El-Jawahri BS, Prigerson H. Update on bereavement research: evidence-based guidelines for the diagnosis and treatment of complicated bereavement. J of Palliat Med. 2006;9(5):1188-1203.
- Shear K, Frank E, Houck PR, et al. Treatment of complicated grief: a randomized controlled trial. JAMA. 2005; 293(21):2601-2608.
- Stroebe MS, Hansson RO, Stoebe W, et al (Editors). Handbook of Bereavement Research and Practice: Advances in Theory and Intervention. Washington DC: American Psychological Association; 2008.
Appendix A - Screening Tools for Measuring Distress
Appendix B - Cultural Diversity and Individual Preferences
Appendix C - Children and Death
Appendix D - Normal Manifestations of Grief (Patient Handout)
Appendix E - Bereavement Risk Assessment Tool
Appendix F - Bereavement Algorithm
Appendix G - Guide to Bereavement Assessment and Support
Appendix H - Caregiver Questionnaire
Appendix I - Distinguishing Grief and Depression
Appendix J - Grief and Bereavement Guideline Resource Links (Patient Handout)
Appendix K - Be Gentle with Yourself (Patient Handout)
Family Practice Oncology Network
The FPON has developed additional appendices including sections on communicating bad news and evidenced based recommendations regarding preserving patient hope. These appendices can be found at www.bccancer.bc.ca/HPI/FPON/Guidelines+and+Protocols.htm
This guideline is based on scientific evidence current as of the Effective Date.
This guideline was developed by the Guidelines and Protocols Advisory Committee, 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.