Palliative Care for the Patient with Incurable Cancer or Advanced Disease - Part 3: Grief and Bereavement

Effective Date: February 22^nd, 2017

Palliative Care Part 1: Approach to Care

Palliative Care Part 2: Pain and Symptom Management

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)

• 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 indigenous community.
• It is not necessary to alter normal grieving, but it is helpful to provide a listening ear, to be supportive, and to provide information.
• Distinguish grief from depression and treat grief-related major depression once you are confident it is pathological.
• In the case of Prolonged Grief Disorder (complicated grief), assess and take note of any risk factors or concerns.
• Primary care providers play a key role in the continued monitoring of patients’ grief responses and may refer the patient to grief counselling and treatment options.

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.

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.

Prolonged Grief Disorder (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.^1,2

Grief and bereavement services should be available to all patients and families based on assessed needs. 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. Physicians who find themselves significantly impacted by a patient’s death should consider contacting the Physician Health Program.  Refer to Associated Document: Resource Guide for Patients and Caregivers.

Grief

Assessment of Grief

• Consider using the Adult Attitudes to Grief Scale³ (Appendix A: Adult Attitudes to Grief Scale-  Patient Handout, Practitioner Score Sheet, and Protocol for Use).  The Adult Attitudes to Grief Scale is a brief, self-reported, evidence-based, practical tool.   The questions are designed to promote an understanding of the patient’s grief and vulnerability by identifying grief reactions (controlled or overwhelmed) and coping responses (vulnerable or resilient).  By scoring responses to the Adult Attitudes to Grief Scale, practitioners can assess levels of vulnerability, and need for support.  A score higher than 23 suggests severe vulnerability and a need for specialized grief support services.
• 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 to Appendix B: Cultural Diversity and Individual Preferences) and be aware of age differences (refer to Appendix C: Children and Death).

Management of Grief

1. 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 scheduled follow-up visits as necessary. Within that context, the following aspects of management should be considered (refer to Table 1).

Table 1: Non-pharmaceutical management of grief

Acknowledgement of loss(es)	Use whatever words are appropriate in the context of the relationship with the patient and family.
Education	Normalize responses to loss, e.g., “you are not going crazy”. Discuss what to expect when grieving.
Lifestyle management	Explore what is personally helpful to the patient, e.g., rest, exercise, social connections, spiritual support, home support, compassionate care benefits program.
Resources	Refer to patient handout: Appendix D: The Grief Journey.

2. 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.

3. Other support

Other support options are patient and caregiver support groups, online support groups, spiritual care and/or faith based communities, and hospice/palliative care programs, including volunteer support. Refer patients for individual counselling when requested and appropriate. Refer to Associated Document: Resource Guide for Patients and Caregivers.

Bereavement includes the period of adjustment following a person’s death and it encompasses many elements of grief, including prolonged grief disorder (complicated grief). Anticipate / screen for prolonged grief disorder (complicated grief) reactions and also consider using Appendix E: Bereavement Risk Assessment Tool to assess risk.

1. Risk factors for Prolonged Grief Disorder (complicated grief)⁴:

• co-morbidities: mental illness; cognitive impairment; substance abuse;
• concurrent stressors: significant other with life-threatening illness;
• circumstances around the death: perceived as preventable, sudden,  unexpected, violent, traumatic or untimely; suicide;found/saw/identified the body; issues with death notification;
• lack of supports: social isolation, disenfranchised grief; cultural or language barriers;
• relationships: anger, ambivalence, resentment; attachment insecurity; high marital  dependency;
• low social support; and
• being a spouse or parent of the deceased.

2. Assessment of bereavement (Refer to Appendix F: Bereavement Algorithm)

• The following tools may be useful in support of the ongoing physician patient relationship:
  • Issues with different ages, especially children (refer to Appendix C: Children and Death).
  • Appendix E: Bereavement Risk Assessment Tool
  • Appendix F: Bereavement Algorithm
  • Appendix G: Guide to Bereavement Assessment and Support
  • Appendix H: Caregiver Questionnaire
     
• Timing for assessment of caregivers for bereavement / grief
  • 2 – 8 weeks: assess for grief related depression (refer to Appendix I: Distinguishing Grief and Depression) and other health issues (eg. sleep, nutrition).
  • 6 months: assess for prolonged grief disorder (complicated grief) if not already identified and treated. 
     
• Diagnosis of Prolonged Grief Disorder (Complicated Grief)
  • Consider using the Prolonged Grief Disorder PG-13 diagnostic tool. Refer to Associated Documents: Prolonged Grief Disorder (PG-13) available online at the Center for Research on End of Life Care at Weill Cornell Medical College: https://endoflife.weill.cornell.edu/sites/default/files/pg-13.pdf
• Criteria for diagnosing Prolonged Grief Disorder (Complicated Grief)^1,5,6
  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 five of the following nine 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;
  • feeling stunned, dazed, or shocked by the loss;
  • avoiding  reminders of the loss; and
  • difficulty trusting others since the loss; social withdrawal.

These symptoms can cause marked dysfunction in social, occupational, self-care, or other important domains.

Management of Bereavement (Refer to Appendix F: Bereavement Algorithm)

1. Non-pharmacological management

Table 2: Non-pharmacological management of bereavement

At time of death (or ASAP thereafter)	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.
After death	Self-management	Provide information about grief, i.e., what to expect and what is helpful (refer to Appendix D:The Grief Journey (Patient Handout). Provide information about local resources (e.g., bereavement groups, spiritual / religious supports, grief counsellors) and online resources (refer to Associated Document: Resource Guide for Patients and Caregivers). Share Appendix J: Be Gentle with Yourself (Patient Handout).
	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.

2. Pharmacological management

85% of grief in bereavement is normal grief, not requiring pharmacological management.^6,7

Table 3: Pharmacological management of bereavement

Benzodiazepines	Benzodiazepines have a very limited role in the management of acute grief. Refer to sleep hygiene resources. See BCGuidelines.ca – Sleep Hygiene: A Guide for Patients (PDF, 28KB). Melatonin is non-addictive and may be a helpful sleep aid for some patients.  Melatonin is prescribed at a wide range of doses (0.1-10 mg at hs).  3-10 mg hs is commonly used in palliative care and geriatric settings.
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 to BCGuidelines.ca – Major Depressive Disorder in Adults - Diagnosis and Management).
Treating Prolonged Grief Disorder (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, in addition to possible pharmacologic management.

References

1. Prigerson HG, Horowitz MJ, Jacobs SC et al. Prolonged Grief Disorder: Psychometric Validation of Criteria Proposed for DSM-V and ICD-11. PLoS Med. 2009 Aug; 6(8): e1000121.
2. Hall C. Bereavement theory: recent developments in our understanding of grief and bereavement. Bereavement Care. 2014 May 9; 33(1):7-12.
3. Machin L, Bartlam B, Bartlam R. Identifying levels of vulnerability in grief using the Adult Attitude to Grief Scale: from theory to practice. Bereavement Care. 2015 Aug 14; 34(2):59-68.
4. Burke LA., Neimeyer, RA. Prospective risk factors for complicated grief. In: Stroebe, M, Schut, H, van den Bout, J, editors. Complicated grief: Scientific foundations for health care professionals, New York: Routledge/Taylor & Francis Group; 2013. p 145-161.
5. Prigerson HG, Vanderwerker LC, Maciejewski PK. A Case for the Inclusion of Prolonged Grief Disorder in DSM-V. In Stroebe M, Hansson R, Schut H, Stroebe W, editors. Handbook of Bereavement Research and Practice: 21^st Century Perspectives. 2008 p. 165-186
6. 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 Oct; 9(5):1188-1203.
7. Zisook S, Shear K. Grief and bereavement: what psychiatrists need to know. World Psychiatry. 2009 Jun; 8:67-74.

These references were chosen to be helpful and do not form an exhaustive list:

• Cairns M, Thompson M, Wainwright W, Victoria Hospice Society. 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. 4^th Edition. Victoria: Victoria Hospice Society; 2006; p. 641-668.
• Dyson T, Statton MA, Sutherland L. Psychosocial care. Hospice Palliative Care symptom guidelines. Fraser Health; 2009.
• Holland JC, Andersen B, Breitbart BS, et al. Distress management. J Natl Compr Canc Netw. 2010 Apr; 8(4):448-85.
• 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 Mar;301(11):1156-64, E1.
• Nam I. Suicide bereavement and complicated grief: experiential avoidance as a mediating mechanism. Journal of Loss and Trauma. 2016 Jul; 21(4): 325-334.
• National Consensus Project for Quality Palliative Care. Clinical practice guidelines for quality palliative care, 2nd edition c2009.
• Ngo-Metzger Q, August KJ, Srinivasan M, et al. End-of-life care: guidelines for patient-centered communication. Am Fam Physician. 2008 Jan; 77(2):167-74.
• Prigerson HG, Jacobs SC. Perspectives on care at the close of life. Caring for bereaved patients: “all the doctors just suddenly go”. JAMA. 2001 Sept 19; 286(11):1369-76.
• Shear K, Frank E, Houck PR, et al. Treatment of complicated grief: a randomized controlled trial. JAMA. 2005 Jun 1; 293(21):2601-2608.
• Stroebe M, Hansson R, Schut H, Stroebe W, editors. Handbook of Bereavement Research and Practice: Advances in Theory and Intervention. Washington DC: American Psychological Association; 2008.
• Young IT, Iglewicz A, Glorioso D, et al. Suicide bereavement and complicated grief. Dialogues Clin Neurosci. 2012 Jun; 14(2): 177-186.

Appendices

• Appendix A – Adult Assessment of Grief Scale – Handout, ScoreSheet and Protocol (PDF, 85KB)
• Appendix B – Cultural Diversity and Individual Preferences (PDF, 77KB)
• Appendix C – Children and Death (PDF, 76KB)
• Appendix D – The Grief Journey (Patient Handout) (PDF. 76KB)
• Appendix E – Bereavement Risk Assessment Tool (PDF, 97KB)
• Appendix F – Bereavement Algorithm (PDF, 77KB)
• Appendix G – Guide to Bereavement Assessment and Support (PDF, 76KB)
• Appendix H – Caregiver Questionnaire (PDF, 77KB)
• Appendix I – Distinguishing Grief and Depression (PDF, 74KB)
• Appendix J – Be Gentle with Yourself (Patient Handout) (PDF, 73KB)

Associated Documents

• BCGuidelines.ca –  Palliative Care: Resource Guide for Patients and Caregivers (PDF, 850KB)
• BCGuidelines.ca – Palliative Care: Resource Guide for Practitioners (PDF, 667KB)
• BCGuidelines.ca – Sleep Hygiene: A Guide for Patients (PDF, 28KB)
• The Prolonged Grief Disorder (PG-13) is available online at the Center for Research on End of Life Care at Weill Cornell Medical College: https://endoflife.weill.cornell.edu/sites/default/files/pg-13.pdf 
  • Additional Resources: endoflife.weill.cornell.edu/

This guideline is based on scientific evidence current as of the Effective Date.

This guideline was developed by the Family Practice Oncology Network and the Guidelines and Protocols Advisory Committee, approved by the British Columbia Medical Association, and adopted by the Medical Services Commission.

A mobile version of this and other guidelines is also available at www.BCGuidelines.ca

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 Contact Information: Guidelines and Protocols Advisory Committee, PO Box 9642 STN PROV GOVT Victoria BC V8W 9P1 Email: hlth.guidelines@gov.bc.ca Website: www.BCGuidelines.ca 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 problem. 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.