Working With Families Institute

In today’s world, families are under increasing stress, from financial and time constraints, to family breakdown, substance abuse, and threats of violence. Family physicians are seeing an increase in psychosocial issues such as anxiety and stress-related disorders, often co-existing with and complicating medical problems such as diabetes or pneumonia. The psychosocial issues are often more difficult to diagnose and manage than are the medical problems—and all take place in the family context. Very often, the family is the key to dealing effectively with the whole spectrum of complaints, requiring a psychosocial assessment. In the crowded family medicine curriculum, this vital area of knowledge and skill is often ignored in favour of more clear-cut procedural skills.

To educate family physicians about dealing with families, a group of family medicine educators, practitioners and mental health professionals affiliated with the Department of Family and Community Medicine at the University Of Toronto founded the Working with Families Institute (WWFI) in 1985. The WWFI has developed various training experiences for trainees and practising physicians.

Goals

The goal of these modules is to provide a learning resource for physicians dealing with common medical and psychosocial issues that have an impact on families. The modules seek to bridge the gap between current and best practice, and provide opportunities for physicians to enhance or change their approach to a particular clinical problem.

The modules have been written by a multidisciplinary team from the Faculty of Medicine, University of Toronto. Each module has been peer-reviewed by external reviewers from academic family medicine centres across Canada. The approach is systemic, emphasizing the interconnectedness of family and personal issues and how these factors may help or hinder the medical problems. The topics range from postpartum adjustment to the dying patient, using a problem-based style and real case scenarios that pose questions to the reader. The cases are followed by an information section based on the latest evidence, case commentaries, references and resources.

How to Use the Modules

The modules are designed for either individual learning or small group discussion. We recommend that readers attempt to answer the questions in the case scenarios before reviewing the case commentaries or reading the information section.

The editors welcome feedback on these modules and suggestions for other modules. Feedback can be directed to Dr. Watson at .

Acknowledgements

The WWFI is grateful to the Counselling Foundation of Canada for its generous educational grant in support of this project. The editors also thank Iveta Lewis (Librarian-DFCM) Brian Da Silva (IT consultant-DFCM), and Danielle Wintrip (Communications Coordinator-DFCM) for their valuable contributions to this project.

In addition, we thank our editorial advisory group including Ian Waters, MSW, Peter Selby MD, Margaret McCaffery, and William Watson, MD.

We also acknowledge the work of the Practice-based Small Group Learning Program of the Foundation for Medical Practice Education, on which these modules are modelled.

Bill Watson

Margaret McCaffery

Toronto, 2014

Working With Families Institute

Working With Dying Patients and Their Families:

A Task-Oriented Approach

Authors:

Michele Chaban MSW, RSW, PhD

Director of the Inter-professional Applied Mindfulness Meditation Program

Factor-Inwentash School of Social Work

University of Toronto, Toronto, ON

S. Lawrence Librach MD, CCFP, FCFP (deceased)
Former Sun Life Financial Chair in Bioethics and Director
Joint Centre for Bioethics, University of Toronto, Toronto, ON

Reviewers:

Mel Borins, MD, CCFP, FCFP, Associate Professor, Department of Family & Community Medicine, University of Toronto;

Active staff, St. Joseph’s Health Centre

Danny Yeung MD, CCFP, CGPP, Associate Clinical Director,
Institute of Family Living and Active Staff, Department of Family and Community Medicine, North York General Hospital;

Steering Committee, Collaborative Mental Health Care Network,
Ontario College of Family Physicians

Editors:

William J. Watson, MD, CCFP, FCFP

Margaret McCaffery, Canterbury Communications

Working With Families Institute, 2014

Chair:William J. Watson, MD, CCFP, FCFP

Associate Professor, Department of Family & Community Medicine and Dalla Lana School of Public Health

University of Toronto

CONTENTS

SUMMARY...... 5

OBJECTIVES...... 5

Key Features………………………………………………………….5

Core Competencies...... 5

CASE STUDIES...... 6

INFORMATION POINTS...... 8

What Do Patients and Families Want?...... 8

Providing Palliative Care...... 9

Tasks in Caring for the Dying...... 10

CASE COMMENTARIES...... 19

REFERENCES...... 21

SUMMARY

The family physician is often involved in the care of patients who are dying. The demands on the family physician often increase after acute care has failed and the person needs palliative care, or when coordinating community resources during therapy, or for pain and symptom management. The complexities of this care are increasing. A task-oriented, interdisciplinary approach will help to ensure a dignified death without unnecessary suffering and help families cope with the loss of a loved one.

OBJECTIVES

After completing this module, you will be able to:

  1. introduce the concept of end-of-life care when a life-threatening illness is diagnosed and educate both the person living with a life-threatening illness and his or her family.
  2. identify the family’s needs and expectations, including biopsychosocial-spiritual issues, and consult, collaborate with, and advocate for the family.
  3. assess and integrate a family's values and beliefs about end-of-life care into an end-of-life care plan, including the roles of the family physician (FP) and hospice palliative care.
  4. identify which values, beliefs, and practices may put a dying person and a family at risk.
  5. monitor the impact of end-of-life care on professional caregivers.

Key Features

  1. Family physicians provide comprehensive and patient-centred care at the end of life.

2.Effective pain control and symptom management as well as coordination of community resources are critical.

Core Competencies

1.Adopt a patient-centered approach.

2.Develop an appropriate treatment plan.

3.Mobilize services within the health care and community institutions on behalf of the patient.

CASE STUDY

Case 1: Elizabeth, aged 44

Six years ago, Elizabeth, an elementary school teacher, had a lumpectomy for breast cancer, followed by adjuvant radiotherapy and chemotherapy. She remained well for almost four years, and then developed a skin recurrence in her scar. This was treated with further surgery. About two months later, she had a grand mal seizure at work. A computed tomography scan revealed at least six metastases to her brain. She was treated with whole-brain irradiation and dexamethasone. Further investigation revealed metastases in her liver, lung, and peritoneum. She began chemotherapy, but had no response to three different regimens. No further treatment is planned. Symptoms include some abdominal pain from a grossly enlarged liver, nausea, constipation, abdominal distension, and increasing weakness. She has also had a number of panic attacks, resulting in weekly trips to the emergency department (ED).

  • How will you prioritize Elizabeth’s medical care now?

Elizabeth is the single parent of two children: Jennifer, aged 14, and Alexandra, aged 19. She has been divorced for seven years from Mel, who is still involved with his children and their support. He has remarried and has two stepchildren. Elizabeth was engaged to be married to Frank, but she called off the wedding when she developed brain metastases. Frank still visits her frequently. Alexandra is at university in a town about 150 km away. Jennifer is at home, in high school but having problems with her school performance. Elizabeth has two sisters and one brother living near her. Her father died of cancer two years ago. Her mother, Madge, also lives nearby, but has had little contact with her daughter since the divorce. Madge is a devout Catholic and does not believe in divorce. Elizabeth has not allowed any of her friends to visit her over the past four months.

  • What are the issues for Elizabeth and her family?
  • How will you approach these issues?

Elizabeth is referred back to you for home management and you make a house call. Your first impressions are that she is very ill, in considerable distress, and quite cushingoid. She asks if you have come to kill her.

  • How will you respond to this question? What could she be asking for?

Case 2: Maria, aged six

Maria has been a healthy child and you have been her FP since her infancy. Four months ago, she began to have problems with her balance. Her examination was abnormal, and you referred her to a pediatric neurologist. She was diagnosed with a very anaplastic tumour of the cerebellum and brainstem. She underwent surgery and some of the tumour was resected. She also had radiotherapy.

Maria is the only child of a single mother, Teresa, who is an office manager for a legal firm. Her father abandoned Maria and her mother before she was born. Teresa’s family lives nearby. Her parents are working and she has two brothers and one sister. The family is Italian in origin. Teresa is planning to marry George, her fiancé, in six months.

  • How can you begin to help Maria and her family?

Maria is left with considerable neurologic deficit after the surgery. She is unable to walk and has problems with hand coordination. Her speech is unaffected. Chemotherapy produces no benefits. Her neurologic status worsens and there is no further therapy for her tumour that would be beneficial to her. Her mother wants to take time off from work to look after her at home, but she cannot afford to lose her job. Her family is willing to help out. Teresa’s parents believe she is giving up too soon and want to mortgage their house to take Maria to Mexico, where they have heard there is a clinic that can cure Maria. Teresa is upset with her parents.

  • What is your management plan for this family?

INFORMATION POINTS

“In some respects, this century’s scientific and medical advances have made living easier and dying harder.”

Field MJ, Cassell CK, eds. Approaching Death, The Institute of Medicine, 19971

1. Our ability to extend life has placed an unprecedented burden on the dying, their families, and communities. As life extension becomes the extension of dying, the end of life can become unbearable. Uncontrolled pain and other symptoms too often cause unnecessary suffering. Dying persons can view themselves as a burden, depleting a family of its emotional and financial resources. In a recent study, disintegration of self and being a burden on the family were cited as the primary reasons underlying a dying person’s request for assisted suicide.2 Faced with caregiving responsibilities, families inevitably feel the toll of care. Harm-reductive, preventive care of the patient and the family can avoid or minimize a family crisis as the end of life approaches. Timely, harm-reductive palliative strategies can enhance a family's internal resources and resiliency, while establishing a legacy of family endurance that will impact generations to come.

2. Often the FP is the primary and major contact with dying patients and their families. From the moment of the first symptoms, FPs can begin to explore the psychosocial and spiritual issues involved in dying and death. From the moment of the first symptoms, the patient and the family may experience anticipatory grief 3, 4 as they anticipate the diagnosis. The theme “hoping for the best and preparing for the worst” allows families to prepare for two possibilities. The assurance that you will be with them no matter what they must face can be enough initial support. Preparing for two paths can help the family adjust and adapt to the complexities that the future may hold.

3. Hospice palliative care is a complex approach involving many health-care professionals, hospitals, specialized treatment centres, doctors’ offices, schools, workplaces, community settings, churches, etc. The primary unit of care in palliative care is the person who is dying and anyone who is emotionally significant to the dying person (the “family”). All of the family needs physical, psychological, and spiritual care. The dying person often chooses the site of care; it will likely include a combination of home, hospital, hospice palliative care unit, or respite care. In all instances, the goal of care should be to create an environment in which the dying person and the family are supported in both the tasks associated with dying and in their individual encounters with death.

What Do Patients and Families Want?

4. Peter Singer5 and others at the University of Toronto asked long-term care patients to define a “good death.” Analysis of this qualitative study revealed the following five dimensions of a good death:

  • Pain/symptom management
  • Avoiding prolongation of dying
  • Achieving a sense of control
  • Relieving the burden on others
  • Strengthening relationships with loved ones

5. In another study of a good death, 6 researchers interviewed chronically ill patients, bereaved family members, and health professionals. The results were quite similar to the Canadian study and included the following:

  • Pain and symptom management
  • Preparation for death
  • Completion
  • Contributing to others
  • Affirmation of the whole person
  • Clear decision-making

6. In another study, 7 patients with advanced illness, bereaved family members, nurses, and physicians were interviewed about their expectation for quality end-of-life care and physician attributes. Out of these groups came the following 12 dimensions, with 55 specific components:

  • Good communication with patients
  • Emotional support
  • Accessibility/continuity
  • Competence
  • Respect/humility
  • Team communication/coordination
  • Patient education
  • Personalization
  • Pain/symptom management
  • Inclusion/recognition of family
  • Attention to patients’ values
  • Support of patients’ decision-making

7. Finally, a study by Lavery et al.2 suggested that dying patients’ primary reason for an expressed wish to die was their unwillingness to observe the suffering they were causing to their family members. In other words, dying patients’ perceptions that they are causing suffering to others is the reason they ask to die unnaturally or prematurely.

Providing Palliative Care

8. Provision of palliative care to relieve unnecessary suffering should begin early in the course of life-threatening illness. This early palliative approach is accepted more easily by patients and families than by cure-oriented care providers. Provision of good family care should also begin early. An integrated approach is complementary and helps avoid traumatic and costly crises, both in the family and for the health-care system.

Tasks in Caring for the Dying

Task 1: Be aware of issues for the patient, for family members, and for the physician and other health-care professionals

9. It is not possible to live or to die without some suffering. There are physical, psychological, social, and spiritual dimensions to suffering. The health-care system should provide care that minimizes unnecessary suffering and attempts as much as possible to address these issues and needs. By concentrating on physical aspects of care, it can be easy to avoid addressing patients’ and families’ psychological and spiritual needs.

10. We are often not educated appropriately about dying and death. This may lead physicians to avoid dealing with dying patients, or to have excess stress or anxiety in these situations. The physician must recognize his or her own issues in dying and death, in order to avoid excess stress and consequent avoidance of dying patients

11. Working with someone who has a life-threatening illness means working with the people who are emotionally significant to that person. Significance does not necessarily mean a positive and healthy relationship. Those most at risk in grief are those who have a history of conflict with the dying person. If this is not dealt with in part or whole while the person is dying, opportunities for reconciliation are lost and the grief processes become more complicated. Eventually, unresolved grief will take its toll on the individual and the family, resulting in poor mental or physical health. Failure to deal with a family’s grief before death takes place can be costly to both the family and the health-care system. Family physicians and community nurses can be overwhelmed by the idea of having to do such extensive family care. However, there are strategies that can help make this an easier task.

12. Social aspects of dying include all aspects of advance planning: living and legal wills, estate planning, finances and responsibilities before and after death, and creating surrogate support systems for bereaved survivors until such time as they have adjusted and adapted to their new role and function in a family after death has taken place.

13. The way we experience the death of others can leave us traumatized. Traumatologist Charles Figley8 raised concerns about the stamina families need in caring for their dying member. With life extension, people are taking more time to die than any previous generation in human history. This takes its toll on people, physically, emotionally, and financially.

14. As care of the dying is extended over months and years, the dying and their family caregivers are exposed to sights, sounds, smells, and circumstances that previously may have remained in the arena of health-care professionals. In care of the dying, family members may expose themselves to traumatic events, which result in traumatic memories. Ongoing assessment, harm reductive strategies that identify and minimize these consequences, and relationship-based counselling can help minimize if not avoid this trauma.