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 T expect when facing a progressive, life-threatening brain 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 A the brain is frequently incurable. There symptoms, patients are ideally able to more fully 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 changes, across . especially because this is a time when you most need the support of your loved one . Expressing ●● Acknowledge and verbalize the frustration this loss can be difficult, and people often feel your loved one feels at not being able to guilty about having such feelings . Additionally, communicate effectively . troubleshooting and coping with new, and ●● Participate in support groups for caregivers sometimes hard to manage, behaviors can be that can suggest coping strategies and frustrating for caregivers . Ensuring that help you feel less alone . caregivers have the support they need and occasional respite will allow them to have the Seizures capacity to compassionately care for their loved A seizure is a sudden attack or convulsion ones . caused by an abnormal burst of electrical activity Some symptoms may be addressed with a in the brain . Seizures – a common and combination of cognitive rehabilitation therapy, distressing problem for patients with brain psychotherapy, problem-solving therapy and tumors – are caused by pressure on the brain medications . Unfortunately, with brain tumor from the tumor, in combination with brain swelling progression, these symptoms can worsen as well or inflammation, also from the tumor . Seizures and become more difficult to manage or treat . occur in approximately 60 percent of brain Seizures, infections or other medical problems tumor patients . can precipitate or worsen these symptoms . This There are several types of seizures . raises the importance of taking advantage of and Myoclonic seizures involve single or multiple enjoying the more lucid moments, since we are muscle twitches, jerks or spasms . Tonic-clonic unable to predict the future . (or grand mal) seizures may involve sudden onset, loss of consciousness followed by body Communication Challenges twitching, tongue biting, periods of no Language and communication can be affected by breathing and possibly turning blue . After-effects, brain tumors . Patients may experience problems including sleepiness, headache, confusion, with finding the right words to use, speaking muscle soreness and sometimes brief periods words in a logical pattern, reading and/or writing, of weakness or numbness, can be seen following depending on the location of the tumor . Patients a seizure . may also have difficulty understanding language . Seizures can be dangerous for patients . For Adjustment is difficult and challenging for the this reason, during a seizure, the primary focus patient with aphasia and their family . There can should be on making sure your loved one is safe .

Palliative and End-of-Life Care for Patients with Brain Tumors PAGE 4 ●● Clear the area of sharp or dangerous objects sedation, to control difficult-to-treat symptoms (in ●● Protect the head from being bumped this case, seizures) . The goal is comfort and the ●● Do not put anything in the mouth relief of suffering . Medications that are typically used include lorazepam (Ativan), phenobarbital, ●● Do not attempt to restrain the limbs during the or midazolam (Versed) . seizure since it could result in injury ●● After the seizure, try to lie the person on his or Delirium her side in order to keep the airway open Delirium is an acute change in mental status ●● Help with reorientation by telling your name, associated with confusion, disorganized thinking where you are and what happened and a change in the level of consciousness (i e. ,. ●● Allow time for recovery and encourage the very sleepy or very agitated) . Delirium can be person to rest until he/she feels like caused by the tumor itself, by medical problems him/herself again such as infection or electrolyte abnormalities, When the seizure subsides, call your neuro- and by medications . oncologist, hospice agency, or other treating If infection or other medical problems are provider for advice about what to do next . The identified, treatment of these issues may help provider may recommend you take the patient to resolve delirium . In these instances of potentially the emergency department for further evaluation, reversible causes of delirium, it is important that or they may adjust the seizure medications by patients keep to their regular sleeping pattern . changing the doses or adding a new medication . For most patients this means sleeping during Medications called anti-epileptics are the night and being awake during the day . Long frequently prescribed to prevent recurrent (>1 hour) naps during the day should be avoided seizures . Sometimes these medications will be and family, friends and caregivers should try to started after a first seizure; other times they may interact with the patient during the day . A quiet be started in patients without a history of seizures environment and minimal interruptions are if the risk of seizures is high enough . Steroids encouraged at night . (usually dexamethasone) are often given to Within the few hours or days before death from decrease brain swelling and reduce symptoms . a brain tumor, some patients become delirious . Typically, as brain tumors progress and patients There may be a role for medication if the delirium approach the end of life, they lose the ability to causes significant distress or agitation . It is eat and swallow . Even towards the end of life, critical your loved one is safe and supported . seizure prevention is important because we Sometimes, ensuring a safe environment may think seizures can be uncomfortable for patients . require 24-hour assistance . Therefore, when patients lose the ability to swallow anti-seizure medications, providers Problems with Eating may recommend changing the patient’s seizure and Drinking medication to a rectal suppository, an oral Food and drink, in addition to being basic human dissolving tablet that dissolves into the blood needs, carry great social meaning, and are also stream through the cheek, or sometimes an equated with nurturing and caring . As such, the intravenous injection if the patient is in the inability of a loved one to eat or drink is often very hospital or a hospice setting . distressing to family members, caregivers and If seizures are frequent, debilitating, and not medical providers alike . responding to typical medications, palliative Nausea can be a common symptom that limits sedation may be considered . Palliative sedation food intake . This can be due to increased brain involves using medications, to the point of

Palliative and End-of-Life Care for Patients with Brain Tumors PAGE 5 pressure and may be associated with headaches . are caused by the build up of pressure in the Medications can also contribute to nausea . skull from the brain tumor are worse in the Patients can become dehydrated because of morning (or at night) and can be worsened by decreased fluid intake . There are several bending over or coughing . Headaches from the medications that can be used to relieve the tumor itself and from increased brain swelling can symptoms of nausea, including steroids . be any type of headache – the most common Progression of brain tumors may cause difficulty being a dull ache . Steroids are the mainstay of eating, chewing or swallowing . This may result in treatment for increased brain pressure and the choking, gagging or food or liquid going down into dose should be adjusted to maximize pain relief the lungs instead of the stomach . These problems and minimize side effects . may be lessened by offering assistance with The majority of headaches can be treated with feeding, and offering small bites of pureed or soft either acetaminophen (Tylenol) or non-steroidal food or thickened liquids . A speech or swallow anti-inflammatories (NSAIDS; Ibuprofen or therapist may be able to make recommendations Advil) on an as needed or scheduled basis . about what type of diet to offer and suggestions Headaches may become more severe as the about how to make it as easy and safe as possible cancer progresses at which time opioids are to eat and swallow . Unfortunately, for most patients, used . Some headaches may be associated with when a brain tumor causes eating and swallowing other neurological changes, such as changes problems, it is likely to get worse over time . in strength, sensation, ability to speak, etc . When a person is not able to eat or drink If your loved one is experiencing fevers, chills due to progression of a brain tumor, it is likely or neck stiffness, you should call your provider, that other symptoms (such as inability to who, under appropriate circumstances, may communicate, altered level of consciousness, recommend you go to the Emergency Room as or seizures) will worsen as well, and that the end these symptoms can signal an infection . of life is approaching . Sometimes patients or families wonder about Fatigue providing food and liquid through a feeding The side effects of brain tumor treatment as tube (in the nose or the stomach) or through an well as the cancer itself can cause patients intravenous line . Artificial nutrition and hydration to be fatigued . Fatigue can manifest in a will not treat the cancer, and, importantly, have not variety of ways including poor concentration, been shown to improve quality of life or prolong irritability, sleeping more, and participating in life . Furthermore, providing artificial food or fluids fewer activities . It is important that patients near the end of life may worsen secretions, listen to their bodies and rest before becoming swelling or breathing difficulty . Most patients who overtired . Rest/nap periods should be are actively dying do not experience hunger or routinely built in to allow the patient to store thirst . The sensation of thirst is most likely related up energy to participate in the activities they to having a dry mouth, which can be addressed enjoy . Gentle exercise is encouraged if the by using moistened swabs or ice chips . patient can safely participate . It is natural that as the brain tumor progresses, the patient will likely Headache become increasingly tired and spend much About half of all brain tumor patients experience of his or her time sleeping . For some patients, headache at some point during their illness . a stimulant medication (methylphenidate) can Patients’ headaches can be variable in frequency, improve energy level and mood . Activities intensity and quality . Typically, headaches that and enjoyable experiences, at this point,

Palliative and End-of-Life Care for Patients with Brain Tumors PAGE 6 may need to be creatively reconfigured to meet Patients with brain tumors may lose the ability to the patient’s energy level, mobility and desires in sense when they need to urinate, leading to their final days . retention . Certain medications can also lead to urinary retention . When this happens, your health Bowel and Bladder Problems care provider can do an evaluation and select the appropriate management . Sometimes for If a patient has a tumor in their lower spine or a comfort, they may recommend a Foley catheter, tumor in the front part of the brain (frontal lobe), which drains urine from the bladder into a bag they may lose control of their bowel and/or close to the patient’s bedside . Patients who bladder . When patients are close to the end of experience incontinence (accidents related to their life, they also often lose the ability to control urine or bowel movements) should also be these functions and/or simply have difficulty evaluated by their healthcare provider to address getting out of bed to walk to the bathroom . any reversible problems (for example, a urinary Sometimes, patients will have difficulty urinating tract infection leading to incontinence) . or having bowel movements voluntarily; other Commodes at the bedside, bedpans (in which times they will experience difficulty controlling the patient can urinate or have a bowel move- these functions, resulting in accidents . Coping ment while lying down on the bed into a special with bowel and bladder problems can be a major pan), and incontinence briefs may be utilized to cause of caregiver burnout . help with this important and distressing problem . Urine retention occurs when a patient has a Attention to skin care is important because of the large amount of urine retained in the bladder . risk of breakdown and ulceration, which can be This can be quite uncomfortable for the patient . painful and become a source of infection .

Caring for the Caregiver aring for a loved one with a terminal illness is extremely difficult, and carries with it intense and prolonged physical and C psychological stress. The cognitive, personality and communication changes that can arise for patients with brain tumors are particularly challenging for families and caregivers. The stress of caregiving may lead to difficulty sleeping, excessive fatigue, difficulty concentrating, and even physical problems including colds, flu and other upper respiratory illnesses. It is important for caregivers to find coping strategies to help sustain their well-being in the midst of stress. The UCSF Orientation to Caregiving Handbook has some excellent suggestions. Find it online at: www.osher.ucsf.edu/patient-care/self-care-resources/caregivers (or http://tiny.ucsf.edu/caregivers)

Palliative and End-of-Life Care for Patients with Brain Tumors PAGE 7 Children in the Home Parenting when there is a tumor recurrence or the disease becomes terminal.

ne of the hardest things about having recurrent cancer is thinking about how and what to tell your children . O It is normal for parents to want to spare their children from pain, but that is not always possible . One thing you can do is give your children the tools to succeed and lay a firm foundation that will see them through life’s trials and troubles . By preparing your children for what is ahead you have a chance to make a real difference in how they handle the experience and how they deal with serious illness in the future . Wanting to protect children from difficult news is natural . That said, children are smart and sense change . If you choose not to talk to your children they may: ●● Feel frightened because they don’t know what is going on ●● Feel alone with lots of worries and no one to talk to ●● Worry that something they have done or thought has caused the cancer to come back ●● Imagine something worse than the reality ●● Think that cancer is something too terrible to be talked about ●● Misunderstand the situation and get the wrong idea . In addition, if children learn the news from others outside of the family, it can jeopardize their trust in you . They also may find information online that is inaccurate . It is very important to include them in understanding the status of the disease and the plans .

Palliative and End-of-Life Care for Patients with Brain Tumors PAGE 8 Positive outcomes of being open and involving Terminal Illness your children and teens include: It is important to let your children know if the ●● Making them feel more secure and less treatment is not working and no further treatment anxious is to be given . Do spend some time thinking ●● It gives them permission to talk . They can ask about how you will answer questions . Know how questions and say how they feel you will answer possible questions that may ●● It shows you trust them and you don’t need to come up, such as ‘What will happen to me?’ be on guard with what you say all the time ‘Am I going to die too?’ ‘Will other people I love ●● It can make you feel closer . Your children can die too?’ ‘Is it my fault?’ help support you and you can support them Explain that the treatment is no longer working . Doctors have tried their best but the cancer is ●● They will learn how to cope when life isn’t going according to plan . not going away . What everyone hoped for is no longer possible . The cancer is still there and is It is important to be honest . Children need to be growing and spreading and this means that the prepared to know how the treatment or illness parent may not live that much longer . will affect their lives . They need to know what the side effects might be, what changes in family routine are anticipated, and when life might Children’s Responses return to normal again (if that is possible) . They Your child may react to your illness with behavior need to be included so that they can prepare you wouldn’t normally accept . Some children themselves for what happens next . Research may have problems with eating, sleeping, or shows that children with a relative who has bed-wetting, or problems at school . They may cancer recurrence learn to be more sensitive to seem sad or withdrawn or have physical peers with family troubles . In addition, the symptoms, like losing appetite, headache or process of letting them feel some of life’s painful stomachache . These behaviors are normal realities often leads to a more mature outlook . responses in and of themselves, but if they They learn that you can trust them to deal not persist or interfere with your child’s ability to only with the happy parts of life, but the hard participate in normal activities, he or she may parts as well . need help . There are lots of people to help support your child . Check with your pediatrician . What Should You Say? Speak with the school, teachers, counselors, a social worker, your oncologist, or try the You can always start by asking questions to the psychological services at the cancer center . child and determine what their understanding is Children who are under 3 years of age know and what they think is going on . You can use something serious is happening, but don’t those answers to correct any misinformation that understand death or the permanence of it . they have and gently offer the new information . Children age 3-5 years have heard of dying, You can say something like, “the tumor has but don’t really understand it . They think of it as come back and more treatment is needed . living somewhere else and need reminders that The doctors are doing everything that they can ”. that person will not come back, as well as Try to be honest and still offer hope . reminders of the nice things they did together .

Palliative and End-of-Life Care for Patients with Brain Tumors PAGE 9 Children age 6-12 years have an understanding Ideally children can be given gradual of death, but not all the emotions that go with it . explanations about what has happened and why By 9 years they understand it like adults . and what to expect next . Older children often They worry that death is frightening or painful . want more information . Children’s concept of Teens have the hardest time coping . That time is different from adults, so children don’t is in part because of the normal developmental cope well with lots of lead time, waiting for a milestone, the process of establishing parent to get worse and or die . Present independence from their parents . They information gradually, only when you are fairly understand what it means to have major change certain it will happen in the near future, as in days and loss . Some pull away and some pull close . to weeks . Everyone should remember that there is no right or wrong way to feel . They may get angry with Good Strategies you, spend more time with their friends, and feel for Talking about Dying guilty about both . Teens are already having a lot of emotional ups and downs as part of their ●● Be honest, use straightforward language . development . Knowing that a family member has ●● Use the words death or dying, avoid words like cancer or is dying can make things even harder . lost, passed away or going to sleep . Teens are often not comfortable talking to their ●● Reassure them that they are not responsible parents about their emotions . They may have for the illness or the death . support from their friends or other adults . It is ●● Don’t hesitate to get or use outside support important to make sure they have someone to talk to outside of the family, maybe a support group or online chat group . If you are having trouble sorting through all the emotions that When to Tell Them surface at this time, think about Many factors influence when a child should be talking with an expert who told that a parent is going to die . The first depends what a child has been told to date . has worked with other families Make sure they know it is ok to talk . They may facing similar problems. have worries about who will take care of them . Make sure the kids know you have a plan . You While you may be able to solve some of these can call it a back-up plan or a just-in-case plan, difficult issues on your own, you may lose and you can review it with them, ask what they valuable time if you depend only on yourself . think, and give them time for questions . In not Oncology social workers, nurses, psychologists, preparing a child for a parent’s death, you run and other cancer care counselors have the risk of a child feeling like they are not experience and education that prepares them important enough to share it with, that death is to work with families in your situation . Let so terrible they will not be able to cope, or they yourself be helped by their experience and what may believe it is their fault . they have learned with coping with the problems of serious illness .

Adapted from information previously published by: Macmillan Cancer. Support – macmillan org. uk. American Cancer Society – cancer org.

Palliative and End-of-Life Care for Patients with Brain Tumors PAGE 10 Advance Care Planning

dvance care planning involves conversations, decision- making and documentation of a patient’s future A medical care and end-of-life preferences . Advance care planning is important so that a patient’s wishes can be known and respected in the event they become unable to speak for themselves . Advance care planning topics include: resuscitation preferences (code status), appointment of a Durable Power of Attorney (DPOA), and preferences regarding other medical interventions including antibiotics, artificial nutrition and hydration, and a focus on comfort care . Thoughtful advance care planning is critically important for ensuring your loved one receives medical treatments that are in line with their own goals and values . If your loved one does get more ill, knowing your loved one’s preferences ahead of time may make hard decisions around medical treatments that arise at the end of life easier . Advance care planning should be done EARLY in a patient’s illness to ensure they are able to participate fully in these conversations before becoming too sick . That being said, it is perfectly reasonable and expected that during the course of illness, a patient’s preferences may change . If/when this happens, new documents related to advance care planning can be completed to reflect these preferences . Advance care planning conversations often start during a medical visit with the patient’s health care provider and then continue with the patient and their friends and family after the appointment . Patients and caregivers should feel empowered to ask to discuss this important topic with a health care provider they trust .

Palliative and End-of-Life Care for Patients with Brain Tumors PAGE 11 Key questions for patients to The other portion of the advance directive consider include: allows patients to document whether they would like to have CPR (cardiopulmonary resuscitation, ●● Who would they want to make medical chest compressions) if their heart stops and be decisions for them if they became too sick to intubated (breathing tube placed through the make them? mouth down into the windpipe) and placed on a ●● What medical treatments would they want ventilator in the ICU if their lungs fail (“full code”), or not want if they were close to the end of or forgo these measures and allow natural death their life? (“DNR/DNI” or “AND”) . Patients and families are ●● What types of things would be important to encouraged to discuss the options for them at the end of life (e g. ,. being at home, not resuscitation with their health care provider, with being in pain, being lucid, etc )?. the goal of choosing effective interventions that These important preferences should ultimately are in line with their wishes and values . be legally documented . The most common Once the advance directives are completely way to do this is by completing an advance filled out, they should be signed, dated, and directive . In their most basic form, advance copies should be kept at home and also included directives include the Durable Power of Attorney in the patient’s medical records . Once they are (DPOA) and a section detailing a patient’s signed, they become legal, official forms . It is resuscitation preferences . Some advance important to note, however, that if the patient (or directives will also provide space for patients to health care proxy if the patient has lost the ability document other medical preferences, including to make decisions) changes his or her treatment treatments like artificial hydration and nutrition preferences, these newly expressed wishes and comfort measures . should typically supercede any past In the Durable Power of Attorney (DPOA) documentation . section, the patient is asked to identify their health care proxy . A health care proxy is the Advance care planning person(s) the patient designates to make documents may vary by the decisions regarding medical care if the patient is unable to participate in these decisions (i e. ,. he or state you live in, and you she is too sick, too confused, or prefers not to) . can obtain your state’s version Typically a health care proxy should be someone who knows the patient and their wishes well, and from your doctor, legal offices or will make decisions that are in line with the state departments. Additional patient’s hopes and wishes . The health care proxy is often a spouse or relative of the patient; advance care planning resources people under 18 years of age as well as health can be found at the end of care providers are unable to be health care proxies . The patient should make sure to ask this this booklet. person if they agree to be the health care proxy .

Palliative and End-of-Life Care for Patients with Brain Tumors PAGE 12 Role of Hospice

ospice is a model of care that emphasizes Specialized services provided comfort and quality of life for people with by hospice include: Hlife-limiting conditions . Hospice provides highly skilled symptom management alongside ●● Manage pain and other symptoms comfort and support to patients and their loved ●● Offer support with the emotional and spiritual ones . Patients are eligible for hospice care when aspects of dying a doctor deems their illness is expected to lead ●● Provide medications, medical supplies and to death within six months . This does not mean equipment that care will only be provided for 6 months; ●● Teach family members skills to help them hospice can be provided as long as the person’s provide care physician and hospice team certifies that their ●● Deliver special services like speech and condition remains life limiting . Also, if the patient physical therapy if needed gets better and/or would not like to be in hospice care anymore, they can always unenroll . ●● Provide support and counseling to family Hospice care takes a patient- and family- members and loved ones centered team approach . A hospice team ●● 24-hour availability typically includes a doctor, nurse, social worker, ●● Short-term inpatient or respite care chaplain, home health aide, and trained ●● Bereavement services volunteers . The team works together to address the patient and family’s physical, psychological, Most insurance companies cover home hospice social and spiritual needs . The goal of hospice is care, and it is covered by Medicare nationwide . to keep the patient pain and symptom-free as Speak with your insurance carrier to determine long as possible; the goal is not to hasten death . your loved one’s coverage and co-pay . Interestingly, there is some data to suggest that If coverage is unavailable, the hospice team patients in hospice care may live longer, perhaps may be able to use community or foundation due to better symptom management . During this funds to provide services . There is often a daily phase of the patient’s illness, non-essential room and board fee for inpatient hospice . medications are discontinued and all medicines essential for optimal symptom control continued . For more information about If a patient decides to begin hospice care, he or she can remain at home and have regular visits hospice, please talk with your from the hospice staff . Alternatively, when health care provider. The social preferred by the patient and family (usually due to complex social and symptom management worker assigned to the patient’s needs), the patient can be admitted to an in- medical clinic is often very patient hospice . helpful in providing information about hospice care.

Palliative and End-of-Life Care for Patients with Brain Tumors PAGE 13 What to Expect in the Final Hours he dying process involves a number of physical changes, which include increasing weakness and T fatigue, decreasing appetite and fluid intake, decreased circulation, neurological dysfunction, pain, and loss of ability to close one’s eyes . Some people become sleepy, which progresses to a coma, followed by death . Others become restless, confused and agitated . Noisy, labored or wet breathing is common . Other symptoms may include pain, shortness of breath, urinary incontinence, restlessness or nausea . Noisy, moist breathing is caused by pooled secretions that the patient can no longer clear by cough or swallow . This is typically more distressing to family members than to the patient . Suctioning is not helpful for this symptom . Repositioning the person on their side may help secretions drain . Sometimes medication is used in attempt to decrease oral secretions . The breathing pattern may also become irregular, with pauses in breathing sometimes lasting as much as a minute . Delirium, or altered mental status, is a normal part of the dying process . Common themes include visitations, travel, crossing-over, unfinished business and fears . If these symptoms are distressing, they are addressed with caring support and reorientation . Sometimes sedating medications are used for severe distress or agitation . As touch can heighten communication, you should show affection in familiar ways . It is okay to lie beside the patient in privacy to maintain as much intimacy as you feel comfortable with . Loss of bowel or bladder control is common at the end of life . Sometimes a urinary catheter is used to minimize the need for changing and cleaning . However, it is not always necessary as urine flow is frequently minimal, and absorbent pads or surfaces can be used .

Palliative and End-of-Life Care for Patients with Brain Tumors PAGE 14 While many people fear that pain will suddenly presume that the unconscious patient hears increase during the dying process, there is no everything . Families should talk to the patient as evidence to suggest that this occurs . Pain may if he or she were conscious . Try to create an be associated with grimacing and continuous environment that is familiar and pleasant . facial tension, particularly across the forehead Surround the patient with the people, children, and between the eyebrows . Increased respiratory pets, objects, music and sounds that he or she rate or labored breathing may also be an would like . Include the patient in everyday indicator of pain . Pain can be treated with conversations . Say things you need to say . medication, usually a concentrated oral morphine At times, it may seem that a patient may be solution that is administered under the tongue waiting for permission to die . If this is the case, and does not need to be swallowed . Adequate you should give the patient permission to “let go” pain relief does not hasten death and all efforts and die in a manner that feels most comfortable . should be made to ensure that the patient is This may include statements such as “I know comfortable and pain free . that you are dying; please do so when you are Families will frequently find that their ready,” or “I love you . I will miss you . I will never decreasing ability to communicate is distressing . forget you . Please do what you need to do when We don’t know for sure what unconscious you are ready ”. patients can actually hear, but it is prudent to

What to Do When Someone Dies

hen someone dies, nothing needs to be called so that they can send a nurse to pronounce done immediately. Take the time that the death of the patient. If the patient dies at W you need to grieve. Some families want home without hospice care, either a doctor or time to sit quietly with the body, console each nurse needs to come to the house to officially other, and maybe share memories. Others may pronounce the death or you need to call 911. If prefer to leave the room. During this time, you you have an advance directive or medical order could ask a member of your religious community stating the patient’s preferences for resuscitation, or a spiritual counselor to come. This is also the this should be presented to the emergency time to notify people who may want to visit response providers. They may need to bring your before the body is moved. loved one to the emergency room, so that the The death must be officially pronounced. This emergency room doctor can pronounce death. step makes it possible for a death certificate to Arrangements should be made to pick up the be completed, which is a key step for many body as soon as the family is ready. Usually this reasons, including life insurance and financial and is done by a mortuary. The hospital or nursing property issues. A mortuary needs the death to facility, if that is where death takes place, may be legally pronounced, in order to begin funeral call the mortuary for you. If at home, you will arrangements. If the patient dies at home and need to contact the mortuary directly or ask a hospice has been involved, hospice should be friend or family member to do that for you.

Palliative and End-of-Life Care for Patients with Brain Tumors PAGE 15 Grief and Bereavement

he diagnosis of a brain tumor can be a When your loved one dies, first and foremost sudden, life-shattering event for all remember: you neither need to be inspirational to T involved. The grieving process for families others nor conquer your grief. Also, keep in mind often starts at the time of diagnosis, since the that what one person finds helpful may be quite personality and cognitive changes caused by a different for another person. It may take some brain tumor can disrupt the very relationships trial and error to figure out how best to take you depend on for support during difficult times. care of yourself. Some people may find it helpful The medical decisions and care involved can to talk with others about their grief, particularly be overwhelming, especially if your loved one is others who have been through a similar not himself or herself due to the illness. experience. Others might find solace in their You may experience a wide range of emotions church or religious order, a bereavement group including sadness, grief, anger, frustration, relief, or individual counseling. Although not for confusion, doubt, anxiety, isolation and guilt. It everyone, some people find meaning in may be confusing to experience grief while your public speaking, advocacy or volunteer work. loved one is still alive. These are all normal things Though your life will never be exactly the same; to feel. There is no right or wrong way to express typically, the emotions you experience as you and deal with all these emotions. Give yourself grieve will get easier over time. the permission and latitude to experience whatever emotions you may be feeling. It is not If you find the intensity and your fault. Do not feel guilty about your emotions, asking for help, or asking questions and wanting frequency of grief does not begin to be prepared for the end of life. to improve by six months after the death of your loved one, you should see your own physician to discuss possible treatment for a condition called “complicated” or “traumatic” grief.

Palliative and End-of-Life Care for Patients with Brain Tumors PAGE 16 Suggested Resources

General Information on Palliative Care

●● Center to Advance Palliative Care (www getpalliativecare. org).

●● American Brain Tumor Association (http://www .abta org/brain-tumor-treatment/continuum-of-care/palliative-care. html).

Brain Tumor Symptom Overview and Management

●● Cancer net. (www cancer. net/cancer-types/brain-tumor/symptoms-and-signs).

●● American Brain Tumor Association (www .abta org/brain-tumor-information/symptoms/).

Advance Care Planning Resources:

●● PREPARE Website (www prepareforyourcare. org). Provides concrete examples on how to identify what is most important in life, communicate that with family and friends and doctors, make informed medical decisions, and choose a health care proxy .

●● Caring Connections (www caringinfo. org). Information on Advance Directives; Download simple, state-specific Advance Directive forms .

●● Go Wish (www gowish. org). Go Wish is a card game designed to help you find words to talk about what is important if you were to be living a life that may be shortened by serious illness . The Go Wish card game is an advance care planning tool developed by Coda Alliance to help people have conversations about end-of-life care .

●● The Conversation Project (theconversationproject org). This website offers help in expressing and communicating your end-of-life wishes with others .

●● National Brain Tumor Society (www braintumor. org/brain-tumor-information/#caregiver-resources).

●● UCSF Osher Center for Integrative Medicine Caregivers Project (www osher. ucsf. edu/patient-care/self-care-resources/caregivers). . Orientation to Caregiving handbooks are available at the above website, in addition to other resources for caregivers .

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