www.hrh.ca Medical Program What You Need To Know About Palliative Care What s Inside: Who are your team members?... 2 Care Needs of Your Loved One: Information for the Family... 4 Options for Discharge... 5 Supporting and Accompanying You Through the Journey... 5 What can your family and friends do to make you more comfortable?... 6 Special Events... 6 Questions/Notes... 7 What is palliative care? Palliative care aims to relieve patient suffering and improve the quality of living and dying. It strives to help the person and their family address physical, psychological, social, spiritual and practical issues. It is appropriate for any person or family living with a life threatening illness regardless of age. Palliative care is helpful in the early stages of a person s illness. The focus of care is on early identifi cation, assessment and treatment of pain and other symptoms. The purpose of palliative care is not to remove hope but to refocus hope to one that has meaning and value for you. Talk to us about your feelings and concerns. We are here to help support you and your family. If you have questions about palliative care, please speak to your nurse or doctor. English This information is important! If you have trouble reading this, ask someone to help you. Italian Queste informazoni sono importanti! Se ha diffi coltà a leggere questo, chieda aiuto a qualcuno. Spanish Esta información es importante! Si tiene difi cultad en leer esto, pida que alguien le ayude. What can palliative care offer you and your family? The care team will develop a plan of care with you and your family that will best suit your needs while you are in hospital. This will include: Controlling and managing your pain Controlling and managing other symptoms such as nausea, vomiting, bowel problems, decreased appetite, shortness of breath, tiredness, anxiety and overall well-being Providing emotional and spiritual support for all faiths Supporting you and your family in coping with loss, grief and bereavement Providing information to you and your family about community support services Coordinating your return home or palliative care placement. Form # 000278 2006_01 REV 2016_03 Page 1
Who are your team members? An interdisciplinary team of health care professionals make up your palliative care team. You may receive care from some of these team members during your hospital stay. The core team consists of a palliative care doctor, nurses, social worker, pharmacist, dietitian and spiritual care provider (chaplain). Additional support is available as required from a speech language therapist that specializes in swallowing issues, occupational therapist, physiotherapist, child life specialist and respiratory therapist. Our goal is to provide compassionate and supportive care to you and your family that is sensitive to your individual needs. Palliative Care Doctor Nurse Spiritual Care Provider (Chaplain) Child Life Specialist Bioethicist A doctor will give you medical care to help manage your pain and control other symptoms that you may experience. Other doctors and specialists may be involved as needed. Your nurse will help with your physical and medical care. They also bring in other health support services as needed. Other nurses may be involved in your care, such as a nurse clinician (for pain and symptom management) and a clinical nurse specialist (for wound & skin or cancer care). The spiritual care provider can meet with you and your family as you cope with the spiritual questions related to your illness. Spiritual care providers help people to fi nd new meaning and hope (Spiritual Care), provide or offer services such as blessings and prayers (Religious Care), or contact a spiritual representative of your choice. The spiritual care provider is available to give you support at all stages of your illness. The child life specialist helps children and families cope with stressful situations that may occur when an ill family member is in hospital. The child life specialist provides support and information to help reduce stress, trauma and anxiety for children of loved ones who need palliative care. The child life specialist can also refer the child and family to community resources for follow up and support, if needed. Healthcare is often full of many choices that may or may not seem like a good choice. These choices can cause feelings of distress and uncertainty. The bioethicist can help you understand and make diffi cult choices by exploring and clarifying your values and beliefs. If you are having trouble deciding what to do, the bioethicist will work with you, your family, and the rest of the health care team to consider any social, legal, cultural and religious traditions. Humber River Hospital Page 2
Registered Dietitian Occupational Therapist Physiotherapist Speech-Language Pathologist Problems with eating are common with illness. A registered dietitian specializes in food and nutrition. The dietitian works closely with the health care team to meet your nutrition needs. The goal of the nutrition care plan is to ensure your comfort. In most cases, there is no need to restrict your diet. The occupational therapist looks at your day-to-day activities and any problems you have in doing them. They can make recommendations on how to: Continue with some of your activities based on your energy level Get into comfortable positions lying in bed or sitting in a chair Relax, using breathing and relaxation techniques. By getting your mind and body to work together, you can gain control over some of your worry and anxiety. Physiotherapists work closely with the occupational therapist and other team members to help with your comfort. They will help with problems that you may have, such as: Your ability to move around: They will look at your activity level and teach you how to move safely both in hospital and at home. They will also show you how to use aids that help you stay independent. Chest and lung conditions: If requested by the doctor, the therapist will teach you deep breathing and coughing exercises. This will help improve your breathing and keep your lungs clear of secretions. Pain: In addition to medicines prescribed by your doctor, physiotherapists may also use hot packs or cold compresses to help control your pain. The speech-language pathologist will help you communicate with family, friends and staff members. They will also help your family and friends communicate with you. They help you eat, drink and swallow safely, and make suggestions about oral/mouth care and any comfort care measures that you may require. Your doctor may ask a speech-language pathologist to assess your swallowing. Using a variety of liquids and food textures, they check your ability to move your tongue, lips and jaw to chew and swallow. You may need to stop eating or drinking if it becomes too diffi cult, uncomfortable, or unsafe for you to swallow. Together with your care team, the speech-language pathologist will recommend the safest diet for you. Humber River Hospital Page 3
Social Worker You and your family may experience different emotions such as denial, helplessness, anger, and depression. The social worker will help guide you and your family through the social, emotional, and practical aspects of your illness. The social worker provides the family with support and counseling to cope with anticipatory grief and bereavement after a person dies. Your social worker works on your behalf to make sure that your needs and rights are recognized. You and your family can work with the social worker to ensure that your needs and rights are recognized. Ask the social worker about fi nancial benefi ts/entitlements, funeral arrangements and legal matters such as power of attorney. Together with the health care team, the social worker assesses your care needs and assists you and your family to make plans for leaving the hospital. If you and your family expect that returning home will be diffi cult, the social worker will refer you to the discharge care coordinator for information on palliative care facilities, nursing homes and home care in the community. For Your Safety It is important to have non-slip footwear when you are walking. Inform your doctor of all the medicines that you are presently taking, including alternative or complementary therapies. While in hospital, only take medicines that are prescribed for you. Send home any other medicines. Care Needs of Your Loved One: Information for the Family After your loved one has been admitted, we would like to meet with the family so that we can give you information about your loved one s care. Some frequently asked questions include: Who makes decisions? The care team will be asking you and your loved one who you want included in the decision making process. Some of the decisions will involve treatment options, discharge options, and advance care planning, including advance directives and POA (power of attorney). What can we expect if my loved one has pain? The doctor, nurses and other members of the health care team will continuously assess your loved one for pain and pain control. The experience of pain can vary from person to person and from day to day. Pain can be a physical, emotional, and/or spiritual experience for any person. Medicine is the most common treatment for pain, however there are other ways the health care team can help to relieve your loved one s pain and other symptoms. Humber River Hospital Page 4
We are available to help and support you and your loved one so that your loved one s comfort is maintained. If you have a cancer diagnosis, chemotherapy or radiation may be offered as a comfort measure to control symptoms. What can we expect to happen as my loved one s condition changes? The care needs of your loved one will change as his/her condition changes. The doctor and the nurses will keep you informed on a regular basis. A time will come when the treatments your loved one is receiving does not change how the illness will progress. The health care team will continue to provide care that will maintain comfort, preserve dignity, and offer support to you and your loved ones. This may be the time that you may wish to involve your spiritual advisor, or you may request to have the Palliative Care team be involved in your loved ones care if this has not yet taken place. The spiritual care provider and social worker are available to speak with you and your family. Will my loved one continue to receive intravenous therapy (I.V.)? Depending on your loved one s medical condition, I.V. therapy for hydration, antibiotic, or other medications may be needed. The doctor can provide you more information on the treatments. Keep in mind that the goal of palliative care is to provide the most comfort for your loved one. Is it possible to take my loved one home? Often the person requiring palliative care wishes to return home until his/her death. We respect the wishes of the person. The family and support system have an important role in caring for the person at home. You may want to discuss this option with the doctor and the nurse. A family meeting is often encouraged so that the health care team can assist with coordinating the most appropriate support services for you and your family. Options for Discharge If going home is not an option, then a Palliative Care Unit, Long Term Care, or Complex Continuing Care will need to be considered and referrals will be sent according to your medical and physical needs. The care team will provide information about various placement facilities. You are encouraged to tour these facilities and the care team will then assist in completing placement applications. Once a bed becomes available, the doctor and the care team will ensure that your loved one is stable for discharge. You and/or your loved one will be notified about the bed offer and a transfer will occur within 24 to 48 hours. If you need more information, speak with your nurse, social worker or doctor. Supporting and Accompanying You Through the Journey As your illness progresses you may feel at a loss as to what to do. This feeling may include loss of control, loss of hope and the loss of a future. You may be asked at this time to make diffi cult decisions, such as withdrawal of treatment and withdrawal of food and fl uids. This can be overwhelming for you. Feel assured that the care team are there to support you and will continue to provide active and compassionate care. The grief you are feeling at this time is normal and expected. It is important to recognize your feelings and get support from family and friends. Spiritual support can offer great comfort at this time. You may experience feelings like anger, guilt, denial and sadness. The care team encourages you to share your feelings so that you can be supported. Humber River Hospital Page 5
What can your family and friends do to make you more comfortable? We encourage that you spend time with your loved one at the bedside. We do not restrict visiting hours when your loved one is at the palliative stages. We encourage that you participate in your loved one s care such as dressing, feeding, accompanying your loved one for walks, and other similar activities. Do bring in pictures, special mementos, pillows, comforters, or other personal items. Special events There are often important and special events in your loved one s life that you would like to celebrate. We can accommodate small gatherings in our Patient Lounge area. We also encourage day passes so that your loved one can be part of family gatherings and celebrations. Talk to your care team about your loved one s interests, hobbies, likes, and dislikes. This will help us increase your loved one s comfort. For Your Safety We ask that you keep your loved one's valuables such as jewelry, wallets, and money at home. For family member and visitors, please do not come to the hospital if you are feeling unwell, have a cough or fever. Ask your care team for assistance and direction if your loved one is unable to swallow. Humber River Hospital Page 6
Questions/Notes Humber River Hospital Page 7
Questions/Notes For more information, please speak to your nurse or doctor. Humber River Hospital Page 8