Transitions in Care for Patients with Brain Tumors: Palliative and Hospice Care AUTHORS: Michael Cohn, PhD Brook Calton, MD Susan Chang, MD Margaretta Page RN, MS Neuro-Oncology Gordon Murray Caregiver Program UNIVERSITY OF CALIFORNIA, SAN FRANCISCO CONTENTS Overview . 1 Introduction to Palliative Care . 2 Specific Symptoms . 3 Motor and Sensory Problems . 3 Changes in Behavior and Thinking . 3 Communication Challenges . 4 Seizures . 4 Delirium . 5 Problems with Eating and Drinking . 5 Headache . 6 Fatigue . 6 Bowel and Bladder Problems . 7 Caring for the Caregiver . 11 Children in the Home . 8 What Should You Say? . 9 Terminal Illness . 9 Children’s Responses . 9 When to Tell Them . 10 Good Strategies for Talking about Dying . 10 Advance Care Planning . 11 Role of Hospice . 13 What to Expect in the Final Hours . 14 What to Do When Someone Dies . 15 Grief and Bereavement . 16 Suggested Resources . 17 ACKNOWLEDGEMENTS This publication was made possible by generous funding from the DemandHope Foundation and the Neuro-Oncology Gordon Murray Caregiver Program . We also thank Idonah Molina, Program Coordinator for the UCSF Division of Neuro-Oncology, for her review of the material . Design by Laura Myers Design © 2014 The Regents of the University of California Overview he goal of this handbook is to provide an overview of what a patient and his/her family and caregivers may expect when facing a progressive, life-threatening brain T tumor . This handbook is specifically focused on providing effective care at home and at the end of life . Cancer involving the brain can either be primary, meaning that its origin was in the brain, or secondary, meaning that the cancer started elsewhere and spread to the brain . The incidence of secondary brain cancer is rising because treatment options for many cancers have expanded, sometimes resulting in improved survival, but also increased rates of spread to the brain . Some of the problems caused by brain tumors are in common with many other forms of cancer; however, there is a subset of challenging problems unique to brain tumors. We aim to address these unique issues in this handbook. Palliative and End-of-Life Care for Patients with Brain Tumors PAGE 1 Introduction to Palliative Care lthough treatments for high-grade brain loss of appetite, difficulty sleeping, and tumors are advancing, cancer arising from depression. By successfully managing these the brain is frequently incurable. There symptoms, patients are ideally able to more fully A are treatments that may improve symptoms and participate in and enjoy daily life. Palliative care prolong life, but unfortunately, cancer involving can improve the ability to tolerate medical the brain will frequently lead to the patient’s treatments and can help patients better eventual death. Some of the major concerns of understand treatment choices, which often patients as they face the end stages of their allows them to feel an enhanced sense of control illness include uncontrolled symptoms and feeling around their medical care. as though they are a burden. There is increasing Palliative care teams are present in some recognition that patients benefit from receiving hospitals; an increasing number of outpatient their standard oncologic care alongside palliative care clinics exist as well. If you are palliative care. interested in seeing a palliative care doctor, ask your oncologist about services available in Palliative care (pronounced your area. It is important to note that palliative care pal-lee-uh-tiv) is specialized and hospice care are not interchangeable terms. medical care for people with Hospice is a specific type of palliative care aimed at people with a life-limiting illness who serious and/or life-threatening have a prognosis of six months or less and who illnesses. Palliative care focuses have elected to forgo aggressive treatment. Hospice care can be provided at home, at a on providing patients with relief hospice facility, or a nursing home. The goal of from the symptoms, pain, hospice care is to give patients control, dignity and comfort. Typically, patients in hospice and stress of a serious illness. are not admitted to the hospital in an emergency, The goal of palliative care is to unless the hospice team is unable to get a patient comfortable at home. Hospice care also improve quality of life for both provides support and grief therapy for patients’ the patient and their family. loved ones. Both palliative care and hospice care include a Palliative care is provided by a team of doctors, focus on the emotional and spiritual aspects of nurses, social workers, and other health care facing a life-limiting illness for both patients and professionals who work together with a patient’s families. This may include engaging family and care team to provide an extra layer of support. community to provide support, or offering ideas Importantly, palliative care is appropriate at any and resources that help a patient to find age and any stage of a serious illness and can be meaningful ways to say goodbye and leave a provided alongside curative treatment. Palliative legacy. Some patients find meaning in writing care focuses on symptoms such as pain, legacy letters to family members, or in creating shortness of breath, fatigue, constipation, nausea, audio or video recordings. Palliative and End-of-Life Care for Patients with Brain Tumors PAGE 2 Specific Symptoms n the following section, we describe some of the possible symptoms patients living with a progressive brain tumor may experience . In general, the most common symptoms experienced by patients include:I difficulty walking, cognitive and personality changes, difficulty moving various parts of the body, seizures and delirium (confusion and difficulty thinking) . Some patients may have several of these symptoms, while others may have none . Some of the factors that influence the presence and severity of symptoms are the tumor’s location and size, progression of the tumor, and swelling in the brain . Motor and Sensory Problems strength, and balance . An assistive device such as a cane, walker or wheelchair may be Brain tumors can affect the parts of the brain that prescribed to ensure safety and help with control movement and physical sensations . mobility . If mobility becomes severely impaired Depending on the location and growth of the and walking to the bathroom becomes brain tumor, potential problems include: challenging, you may require either a bedside ●● Balance and coordination commode (portable toilet) or bedpan . ●● Impaired coordination of arms, legs, and hands ●● Fine motor control (writing, eating) Changes in Behavior ●● Awkward or stiff movements in arms and legs and Thinking ●● Numbness or tingling The brain is organized, broadly, into compart- ●● Falls ments . Each compartment controls specific ●● Asymmetrical (lopsided) facial expressions mental and emotional functions . These functions ●● Muscle weakness on one side of the body . can be affected by brain tumors, which damage Symptoms vary from patient to patient . For surrounding brain tissue . For this reason, many some patients, mild symptoms may lead to patients experience some change in behavior minimal interruptions and inconveniences in daily and/or thinking during their illness . life . For other patients, symptoms may be so Possible changes depending on the size, loca- severe they affect their life on a daily basis . tion, and progression of the brain tumor include: Symptoms can progress to the point that it may ●● Emotion and Personality Changes: be difficult to walk, feed oneself or maintain Depression, anxiety, obsessive-compulsive regular bowel function . behaviors; changes in emotional control, This loss of mobility and need for increased irritability, mood swings, withdrawal; socially assistance can be very distressing for patients inappropriate behavior and their caregivers . We encourage you to ask ●● Attention and Concentration: Confusion, easily your health care providers for help thinking about distracted, difficulty multitasking and planning what assistive devices and therapies may be helpful for you . Depending on your particular ●● Learning and Memory: Difficulty processing, symptoms, your doctor may recommend that you storing, and retrieving information; short-term see a rehabilitation specialist (physical or memory loss occupational therapist) to learn range of motion ●● Executive Functioning: Decreased reasoning exercises and help to improve your walking, and organizational ability, impaired judgment Palliative and End-of-Life Care for Patients with Brain Tumors PAGE 3 Some patients may have insight into the behavior be feelings of frustration, guilt, anger and and thinking problems they are having, while embarrassment as well as helplessness on the others will not . In some cases, changes in part of both the patient and caregiver . Speech thinking and behavior are so subtle that patients and language therapy or cognitive rehabilitation themselves are more aware of their difficulties therapy may be helpful . In addition, there are than those around them . Changes in thinking, some strategies that family members can follow behavior, personality, and/or mood can make to help cope with these changes . some family members and caregivers feel the ●● Give the person time to talk . Speak slowly, person whom they know and love is no longer the use simple terms and remain calm . same person—that they have already “lost” their ●● Use visual props to help get the message loved one . It is normal to mourn these