Introduction. Dame Cicely Saunders Founder of Modern Hospice Movement

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3 Introduction You matter because you are you. You matter to the last moment of your life, and we will do all we can, not only to help you die in peace but also to live until you die. Dame Cicely Saunders Founder of Modern Hospice Movement I don t know what is going to happen. I don t know what to do. These statements are heard over and over when people physically, mentally and spiritually are facing death. These feelings are shared by both patients and their loved ones. Everyone wants to be able to do something. Too often they don t know what that might be and are not aware of the help available. Good Shepherd Hospice is dedicated to providing help and guidance for people facing death. The goal is to make this stage of life a peaceful passage. Even though the disease may be incurable, much more can be done to ease the pain and suffering of the patient and at the same time involve family members in the patient s care. The National Hospice and Palliative Care Organization Meeting the Challenge for a Special Kind of Caring 1

4 Sometimes the greatest fear is the unknown. Though each of us will experience the end of life in our own way, understanding the final phases of life can help prepare both the dying person and those who love them for one of life s most personal journeys. With knowledge comes understanding, comfort and ultimately strength. Knowing what to expect and what to do will help you feel more certain. To this end, Good Shepherd Hospice s team of medical and patient care professionals has created Peaceful Passages: Care of the Dying Person. Use this booklet as a reference and a resource to prepare you for your role as caregiver. You may have questions not covered in these pages. Please write them down as they arise and discuss them with your hospice team. Don t hesitate to speak to any member of your hospice team about concerns that you may have we re here to help. We hope that Peaceful Passages provides the support that will help you during this trying time. Remember, you do not face this journey alone, we re here to guide you through. What we once enjoyed and deeply loved we can never lose, for all that we love deeply becomes part of us. Helen Keller 2

5 Table of Contents Decisions for End-of-Life Care Physical Signs of Approaching Death Pain Activity/Sleeping Skin Temperature and Color Pressure Ulcers Elimination... 8 Breathing Congestion... 8 Food and Fluids Disorientation/Agitation/Restlessness/Confusion Caregiver Blessing The Final Days Saying Goodbye Getting Prepared Prayer for Presence Involving Children Spiritual Experiences at the End of Life Meaning Guilt Forgiveness Visions Spiritual Closure Questions and Answers At the Time of Death Hospice Care after Death In Closing Readings from Poetry and Prose

6 Decisions for End-of-Life Care For many people, talking about death and dying can feel uncomfortable. It s easier to talk about living. When talking about dying, it may seem as if you are giving up all hope, but such conversations actually lead to a higher quality of life for the dying person and their families. Openly discussing issues surrounding approaching death allows everyone to be better prepared for its arrival. Those dying may want to talk about their death and make their wishes known. When these discussions are postponed, decisions are often made without the dying person s input. This can cause patients and their families unnecessary stress and discomfort. Questions to consider when getting affairs in order: Are the following documents completed? q Living Will q Health Care Surrogate q Power of Attorney q Do Not Resuscitate Order (DNRO) Do you know what they say? Do you know where are they located? What decisions have been made for end-of life care? What are the patient s wishes for a funeral/memorial service? Have funeral arrangements been made? Where will the patient spend his final days? Who will care for the patient? Will artificial fluid and nutrition be started or continued? Make sure your hospice team, doctor and family members have copies of these important documents. Refer to the sections on Advance Directives and Personal Planning in the Good Shepherd Hospice Resource Manual and Care Guide for more information on these topics. It is also a good idea to talk to your physician and hospice team about these issues. 4

7 Physical Signs of Approaching Death Like other stages in life, there are physical changes that are expected in the dying process. Just as pregnancy prepares a woman s body for birth, the body transitions in preparation for death. These changes are normal. This section describes some of the physical changes that may occur during the dying process and how to respond to them. We have found that knowing what to expect and how to care for a dying person eases this transition for both the patient and caregiver. Pain Many people die without having pain. If pain occurs, your hospice team will show you how to give the patient medicine that can relieve the pain. How do you know if your loved one is in pain? Ask! Those with pain are the experts on their pain. Believe what they tell you even if they don t look like they are in pain. It is common, especially with chronic pain, for people to have pain even when they appear comfortable. When a person can t communicate about pain, look for other signs of pain. Examples include tension in the face, frowning, restlessness or difficulty calming the person. Giving patients their pain medicine will reduce these signs of pain. Will my father become addicted if he takes narcotic pain medications? A common fear is that patients will become addicted to narcotic pain medicines. Research has shown that when the proper dose of medicine is given regularly, patients do not become addicted. Your Good Shepherd Hospice team will know when to increase the dosage of pain medicine to keep your loved one comfortable. 5

8 If my mother takes pain medication, will it cause her to die sooner? Some people believe that pain medication will cause a person to die sooner. On the contrary, patients who receive good pain control tend to live longer. They also experience greater quality of life because their energies are not focused on pain. The goal of your hospice team is to keep your loved one comfortable during the dying process. Pain medicine neither prolongs nor quickens the dying process but will keep patients comfortable during the normal course of their disease. What will hospice do to keep my loved one from suffering in the dying process? Good Shepherd Hospice workers are experts in pain and symptom management at the end of life. There are many ways to decrease or eliminate suffering. If you think your loved one is in pain or is suffering, please call your hospice team anytime, day or night. A plan will be put in place to address these symptoms. 6 Activity/Sleeping Patient activity levels decrease as the body approaches death. Your loved one will spend more time sleeping. This is normal. Do not try to keep them awake. Remember that this is the transition time between life and death. Create a calm, peaceful environment. What s important is to be reassuring and be near. Keep in mind that hearing is the last sense to be lost. Patients will continue to hear what is said in the room. Skin Temperature and Color As a person approaches death, the body s ability to regulate temperature will change. Hands, feet and legs may be cooler than the rest of the body. It is not necessary to apply extra blankets or turn on the heat. Never use heating pads or electric blankets unless instructed by your hospice nurse. You may also notice that your loved one may feel hot or even have a fever. Use only a sheet or lightweight cover. Keep the

9 room temperature cool. It may be comforting to bathe the person with cool water. Call your hospice team if the patient s temperature is greater than degrees Fahrenheit. Depending on the illness, a person s skin could take on a yellowish/ golden appearance. Sometimes a grayish tone is noted in the face. Closer to the end of life, you may notice the skin has a spotty pattern of blue or purple discoloration. This can appear on the fingernails, hands, feet and legs. Your Good Shepherd Hospice team will help you understand the changes you see in the patient s condition. Pressure Ulcers You may have heard that pressure ulcers (also known as skin breakdown, bed sores, decubiti) are always due to neglect, but that is not true. As the dying decline, their appetites decrease. They will not take in the foods and fluids needed to keep their skin healthy. They will be in bed most, if not all, of the time and moving less than they have in the past. These factors increase the patient s risk for developing pressure ulcers. Pressure ulcers may be reduced or prevented by turning or changing positions and keeping skin clean and dry. Remember that even though you have provided excellent skin care, pressure ulcers may still develop. Call your hospice nurse if you notice any areas that are red and do not return to a normal color within a few minutes. Your nurse and home health aide will show you how to position your loved one to provide comfort and prevent skin breakdown. Should a pressure ulcer develop, the goal will be to keep the patient comfortable and the ulcer clean. Your hospice team will show you how to do this. This might include applying dressings and creams. No matter what treatment is provided, pressure ulcers may not heal. This does not mean you have not given good care to the patient. 7

10 Elimination Urine output normally slows and may become discolored. Patients may not tell you of the need to go to the bathroom or be able to get there on their own. The ability to control bowel and bladder functions may be lost, and disposable briefs may be needed. Discuss what can be done to protect the bed and keep your loved one clean and comfortable with your Good Shepherd Hospice nurse. Ask your hospice nurse or home health aide to show you turning and care techniques that will help you avoid injuring you and your loved one. Breathing Your loved one will begin to have changes in breathing patterns. You may see rapid, slow or shallow breathing. At times breathing may stop for 10 or more seconds. These changes are normal in the dying process and do not require treatment. Feel free to call your Good Shepherd Hospice team when these occur. Congestion Breathing may sound congested. This normal change is caused by your loved one s inability to swallow and cough up secretions. This gurgling sound may be disturbing to others, but usually does not indicate difficulty breathing. Elevating the head of the bed and turning your loved one s head to the side will allow gravity to drain the secretions. You may gently wipe the mouth with a moist cloth. Suctioning is not necessary because it increases the secretions and causes discomfort. Giving fluids will make the congestion worse. Consult with your Good Shepherd Hospice nurse for suggestions or guidance. 8

11 Food and Fluids In the natural process of dying, a person needs little or no food or fluids. Do not force your loved one to eat or drink. This can cause coughing, anxiety, choking and pneumonia. To keep the mouth moist, you may wet a toothette with water and gently swab the inside of the mouth. Ask your hospice nurse if it is safe to give ice chips, popsicles or small sips of fluid. At this stage, tube feedings and IV fluids will not benefit the patient. These additional fluids can lead to swelling and chest congestion. Refer to your Good Shepherd Hospice Resource Manual and Care Guide for discussion of the pros and cons of IV fluids and tube feedings in the dying process. Feel free to discuss this with your hospice team. Disorientation/Agitation/Restlessness/Confusion It is normal for a person approaching death to become restless, confused and agitated. You may see jerky or repetitive movements. These conditions can be due to many causes. Check to see if the patient is clean and dry, requires mouth care or needs to be turned. Do not restrain the patient. Patients may be irritated by loud noises, bright lights or television. Sometimes stroking or rubbing patients will also agitate them. Gentle touch and soothing sounds create a calm, peaceful environment. If symptoms continue or increase, notify your hospice team. Medications for pain and anxiety may be given as directed to decrease these symptoms. This can be a very stressful period for caregivers. Additional help may be needed. 9

12 Caregiver Blessing May these hands facilitate... Comfort where there is pain, Courage where there is fear, Hope where there is despair, Acceptance when the end is near, And a touch that is gentle with tenderness, patience and love The Final Days Closer to the end of life s journey, a person s energy is used for the basics: breathing and keeping the heart beating. Hearing is the last sense to be lost. In a normal voice, tell your loved one when you come into the room, when you are at the bedside, before you give hands-on care, and again when you leave the room. Let them know you are there just to be with them. You can gently rest your hand on theirs to let them know you are near. 10 Saying Goodbye As you begin to see physical changes in the dying person, you might also see emotional changes. Your loved ones may tell you that they are ready to die and may be upset that death is not coming fast enough. They may want reassurance that you and other family members will be all right. Patients may need you to say that it is okay to let go. There may be people who patients want to see before they die. If this cannot be arranged, a phone call might be just as comforting. Your loved one may not talk very much and may only want to have one or two people nearby. This may be sad for those who want to be close to the patient. Try to understand that your loved one is doing the work that needs to be done to let go. You may wonder when to say goodbye. There is no magic answer.

13 If you feel comfortable doing so, tell the person how much you love them. Follow your heart. Notify significant people of the patient s condition. Let family and friends decide if or when they will come to see the patient. There are many different ways to say goodbye, and no one way is best. Give others permission to do it their own way. Some will want to come before the death to say goodbye. Others will choose to stay where they are and say goodbye in their own way. This is a very personal choice and should be respected. Grieving is an individual journey, and not everyone grieves the same way. There are times when a person appears ready to die. Goodbyes have been said, and everyone is waiting for the final moments. This time can seem to go on much longer than expected. This does not always mean that the patient is not ready to let go or that they have unfinished business. It could simply mean the heart and other vital organs are slower to shut down than expected. Your hospice team will be glad to answer any questions you might have about what you are experiencing. Getting Prepared This is a time when you will want to be focused solely on your loved one. However, there are some things that may need your attention. Consider having another family member or close friend help you do these things: Choose a funeral home or complete funeral arrangements. As hard as this may be now, it can be more difficult later. If you need to know where to start, your hospice counselor can assist you. There is information about making final arrangements in the Good Shepherd Hospice Resource Manual and Care Guide. 11

14 Gather important papers, and put them someplace they will be easy to find. The Good Shepherd Hospice Resource Manual and Care Guide has a list of papers that you may need. This can be found in the Personal Planning Guide section. Put together a list of phone numbers for the people you want to call when your loved one dies. You may not be the one making the calls, so this will help whomever does. If there are religious or cultural rites that need to be observed prior to or at the time of death, tell your hospice team. We want to honor your customs and traditions and assist in locating community resources, if necessary. Prayer for Presence Let us be the ear that listens without judgment and with deep compassion to all that the voice of our loved one has to say in the phase of chaos. Let us be the still and quiet point of acceptance where the personal life is reviewed and resolved, honored and released. Let us be the silent and understanding companion to the voiceless time of surrender. The Grace in Dying: How We Are Transformed Spiritually as We Die by Kathleen Dowling Sing; Harper Collins Publishers;

15 Involving Children Give children of all ages choices about how they want to be involved when a loved one is dying. It is usually parents initial response to try to shelter their children from this emotional experience. However, children often want to be involved. Ask them how they want to take part, and they will tell you. If children have been living in the home or have spent a lot of time with the person who is dying, they will have observed changes and declines. They can be told the patient is close to death. Ask the children how they want to say goodbye. Children who have not had frequent contact with their loved ones will need some preparation. They need to be told about the sights, smells and sounds that they might experience. They may need to be told why the person is dying. Explain in simple terms about the patient s condition, and allow children to ask questions. Children will stop asking questions when they have enough information. Children should not be forced to see or touch the patient or be in the room if they don t want to. Give children the option to change their minds. Children can also send in their presence by way of drawings, poems or letters. This allows reluctant children to be involved in the rituals of saying goodbye. It is a good idea to notify a child s teacher or school of the situation. When it s time to tell children that a loved one has died, do not be afraid to use the word dead. Avoid saying things like, She just went to sleep, The angels took him away, or She has left us. These expressions can confuse and even frighten children. Talk about how the body stops functioning: Her heart stopped beating, or He s not breathing anymore. Children may ask questions about what happens to the body, so be prepared to explain about burial, cremation and funerals. 13

16 Do not hesitate to ask your Good Shepherd Hospice counselor or chaplain for advice or help with talking to children about death. Your counselor can also help you understand the normal behavior of grieving children and the warning signs for problematic grief. The grieving process for children is different than for adults. 14 Spiritual Experiences at the End of Life Meaning Why is this happening to me? or What is the meaning of this illness? are common questions that patients and families ask. There are no simple answers to these questions. It is often helpful to talk about these concerns with trusted friends, family, clergy or your hospice team. Finding meaning at the end of life is an important part of the dying person s journey. Allow people to express their ultimate dreams and fears by listening and by providing gentle comfort. The answers may not be found, but the discussion may lead the person in their quest to find meaning. Guilt Guilt is a powerful emotion. Sometimes caregivers feel guilty that they weren t able to do more for their loved ones. Other times patients feel that they have done something to deserve their illness and express guilt over past actions. However, blaming ourselves for events that we cannot change can be harmful. Guilt can make patients feel overwhelmed and may increase stress for them and their caregivers, family and friends. If you or the patient experience feelings of guilt, remorse or regret, contact any member of your Good Shepherd Hospice

17 team. A hospice chaplain or counselor is available to help you to sort out your feelings. Forgiveness All relationships have periods of joy and pain, and painful memories may still hurt. This can lead to feelings of anger, fear or frustration. Relationships may be damaged or broken. During this journey, it may be important for patients, families and friends to try to mend hurt feelings from damaged relationships. This may be the time to ask for or offer forgiveness for past hurts, pain and regrets. Hospice chaplains and counselors can help you resolve these feelings. Ask any member of your hospice team to get in touch with them for you. Visions Some patients have visions of people who have already died, and some may talk to unseen persons in the room. Others will talk about dreams of loved ones coming to get them. This does not mean patients are hallucinating or having a reaction to medication. This is a common occurrence when people are dying. It is part of the passage from this world. Do not try to convince your loved one that they are not hearing or seeing things. Just quietly listen to the experience, and let them talk about it. If these visions frighten your loved one, hold their hand and speak in soothing tones. Reading from a favorite book or playing soft music can be comforting. If these measures don t calm the patient, consider asking a member of the clergy or a hospice chaplain to visit. 15

18 Spiritual Closure Those dying may seek to mend their relationships with their spiritual being or higher power. In this process, they may experience a variety of emotions. Some will welcome death and are eager to meet their spiritual being. Others may feel anxious or fearful. There may be particular rituals that patients request. They may want to meet with their spiritual leader for counseling and guidance. This is an extremely personal journey. It is helpful for caregivers, family and friends to provide understanding and resources for patients to complete this step. Hospice chaplains are available to visit all hospice patients. They can counsel, provide support and assist in finding spiritual and religious resources. Questions and Answers How much longer before my mother dies? It is very difficult to predict when a person will die. Your hospice physician or nurse can help explain the expected time frame if the disease should take its normal course. Based on changes in the patient, the hospice team may be able to give you an idea of life expectancy in terms of weeks, days or hours. Changes that commonly occur in the last days of life affect temperature, swallowing and breathing. How do I know when it is time to tell family members who live out of state they need to come to say goodbye? Many caregivers are faced with having to make the decision of when to tell family members that their loved one is close to death. This is often difficult because you do not want to tell the family to come too soon or too late. Keep relatives informed about the patient s condition, and let them decide when it is time to come. 16

19 I don t want to leave my loved one s side because I m afraid he will die while I m gone. Is this normal? This is a common concern. You may wish to be with your loved one as he takes his last breath, but sometimes death comes when everyone is out of the room. When you re leaving the room, say good-bye as if you might not have a chance to say hello again. Is it normal to feel relieved that death is near? Because caregiving takes a great toll both physically and emotionally, it is common to feel a sense of relief that your loved one will soon die. Some people view death as the end of a patient s suffering. It is normal to think about how your life will be different after the death. During this stressful time, you may feel a wide range of emotions, such as hope, anger, sadness, uncertainty, helplessness and even peace. It is okay to share these feelings with your hospice team, trusted family, friends and clergy. At the Time of Death When death occurs, call Good Shepherd Hospice, and a nurse will come to the patient s home. Do not call 911 or the police. Death is not an emergency. This needs to be a personal, private time for you and your family. The following signs will indicate that the patient has died. The patient cannot be aroused. The patient stops breathing. The heartbeat stops. The patient s eyelids may be partially open with the eyes in a fixed stare without blinking. The mouth may fall open slightly as the jaw relaxes. Anything in the bowel or bladder may be released as the sphincter muscles relax. 17

20 Good Shepherd Hospice has made arrangements with the county medical examiner that allow hospice nurses to attend the death of a patient and call the funeral home. It might take the nurse some time to arrive at your home. It is perfectly all right to call family, friends and other supportive people to be with you during this time. When the nurse arrives, she will confirm the death. Please provide the name of the funeral home that you would like to have called. The nurse will also ask if you would like the body bathed and how you would like your loved one dressed. Clothes for burial will be taken to the funeral home at a later time. The hospice nurse will call the patient s physician and will assist the family in destroying the patient s medicines. She will make arrangements for hospice equipment to be picked up as soon as possible. A member of the hospice team will stay with you until the funeral home arrives. If you would like to see a counselor or chaplain, one will be called. Hospice Care After Death Hospice care does not stop after the death of a patient. When someone dies, lives are changed forever. Our goal is to help you go on living and remember your loved one in the process. After your loved one dies, you enter into a time called bereavement, when it is normal to feel intense, changing moods or emotions. It is common to feel extreme sadness, relief, guilt, anger, fear, helplessness, anxiety and even numbness during this time. You may have many questions such as Why? or How did this happen? Your whole world may seem to have turned upside down. These feelings are normal. 18

21 Unfortunately, there are no easy answers for coping with pain and grief. We encourage you to be patient with yourself and talk about your feelings with other family members, trusted friends or a grief counselor. If you are hurting deeply, it is because you loved deeply. Within two to four weeks after your loved one dies, you will get a call from the Good Shepherd Hospice Bereavement Department. If you would like to talk with someone sooner, please call our office and ask to speak with the Bereavement Department. Our counselors are available to support and guide you through this difficult process. We also offer grief support groups and other events, such as seasonal memorial services and bereavement camps for children and families. You will receive information about the bereavement process and a calendar of events. In Closing We at Good Shepherd Hospice sincerely hope that you have found what you needed within these pages. Beyond this booklet, your hospice team will remain connected to you and your loved ones as you face this passage. We know that there is no way to prepare for the death of a loved one. Being a caregiver is never easy and is sometimes filled with moments of doubt. Our goals are to address common caregiving concerns and help make your caregiving experience as comfortable and as peaceful as possible. Because when you have someone by your side, traveling even the longest road can be a little easier. Great lives never go. They go on. Benjamin Harrison ( ) President of the United States of America 19

22 Readings from Poetry and Prose A long time I have lived with you And now we must be going Separately to be together. Perhaps I shall be the wind To blur your smooth waters So that you do not see your face too much. Perhaps I shall be the star To guide your uncertain wings So that you have direction in the night. Perhaps I shall be the fire To separate your thoughts So that you do not give up. Perhaps I shall be the rain To open up the earth So that your seed may fall. Perhaps I shall be the snow To let your blossoms sleep So that you may bloom in spring. Perhaps I shall be the stream To play a song on the rock So that you are not alone. Perhaps I shall be a new mountain So that you always have a home. Nancy Wood 20

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24 Choices. Education. Guidance. As a compassionate non-profit organization since 1983, Chapters Health System is committed to enhancing the lives of those affected by advancing age or illness. Through our comprehensive system of healthcare choices, we deliver expert care and heartfelt support to guide the community during the aging and end-of-life journey. From hospice and palliative care for adults and children suffering with life-limiting illnesses to in-home and community-based services for frail but independent seniors, Chapters Health offers a wide range of support services along life s ever-changing landscape. We ll help you navigate your individual experience empowering you with more choices, education and guidance for these important chapters of life. Good Shepherd Hospice is a subsidiary of Chapters Health System Chapters Health System, Inc. 23M K