Understanding Palliative Care PDF

UNDERSTANDING PALLIATIVE CARE Dr. Meryem ERCEYLAN “You matter because you are you. You matter to the last moment of your life and we will do what we can not only to help you die peacefully but to live until you die” (Dame Cicely Saunders) Palliative Care Palliative care is a term derived from Latin...

UNDERSTANDING PALLIATIVE CARE Dr. Meryem ERCEYLAN “You matter because you are you. You matter to the last moment of your life and we will do what we can not only to help you die peacefully but to live until you die” (Dame Cicely Saunders) Palliative Care Palliative care is a term derived from Latin palliare, " to cloak, deceive, or cover.“ What is Palliative Care? ▪ Palliative care is is a multidisciplinary approach and specialized medical care for people with serious illness. ▪ It focuses on providing patients with relief from the symptoms, pain, and stress of a serious illness ▪ The goal is to improve quality of life for both the patient and the family. ▪ It is appropriate at any age and at any stage in a serious illness and is provided along with regular disease treatment. Definition of palliative care World Health Organisation (WHO) -2002 describes palliative care as “an approach that improves the quality of life of patients and their families facing the problems associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems including physical, psychosocial, and spiritual issues.’’ Palliative care: "a support system to help patients live as actively as possible until death” (WHO 2004). Palliative Care Provides relief from pain and other symptoms Affirms life and regards dying as a normal process Intends neither to hasten death nor postpone death Integrates the psychological and spiritual aspects of patient care Palliative Care Offers a support system to families, including bereavement Uses a team approach Enhances quality of life and at times may positively influence the course of a disease Is applicable early in the course of an illness and in conjunction with other life prolonging therapies Hospice is one facet of palliative care Kinds of Care Curative Care: Focuses on a cure to an illness and the prolonging of life. Palliative Care: Focuses on comfort and quality of life that may be provided with other treatments. Hospice Care: Focuses on comfort and quality of life when a cure is not possible with specialize care and services. Palliative Care is Delivered Concurrent with Disease Treatment Core competencies in palliative care Specialty palliative care Integrating Palliative Care into Chronic LifeLimiting Disease Management “best care possible” 100 Bereavement % clinical efforts 0 Terminal phase Time Death Palliative Care & Hospice Hospice is a “type” of palliative care for those who are at the end of their lives. Division made between these two terms in the United States Palliative care can be provided from the time of diagnosis Palliative care can be given simultaneously with curative treatment Both services have foundations in the same philosophy of reducing the severity of the symptoms of a sickness or old age Other countries do not make such a distinction Palliative Care & Hospice Palliative Care Hospice Comfort Care Hospice a specific form of palliative care supplied by an agency the most widespread, developed way to provide palliative care for patients at or approaching the end of life provided in home, at nursing homes, hospitals, or at a hospice residence can reduce the risk of depression in a spouse even when provided to the loved one a few days before death refers to a philosophy of care that seeks to support dignified dying or a good death experience for those with terminal illness It involves a core inter disciplinary team of professionals and volunteers who provide medical, psychological and spiritual support for the patients and family HISTORICAL PERSPECTIVES OF HOSPICE CARE The term first developed from the word hospitality by a physician Dame Cicely Saunders in the year 1960 for dying patients, who is the founder of the First modern hospice St.Christopher‘s in London 1969 – Psychiatrist Elizabeth Kubler Ross explained about 5 stages of death in his book -on death and dying- which emphasis the need of death and dying NEED OF PALLIATIVE CARE-WHO Palliative care improves the QoL of patients and their families who are facing challenges associated with life-threatening illness, whether physical, psychological, social or spiritual. The quality of life of caregivers improves as well. Each year, an estimated 40 million people are in need of palliative care; 78% of them people live in low- and middle- income countries. Worldwide, only about 14% of people who need palliative care currently receive it. NEED OF PALLIATIVE CARE-WHO The global need for palliative care will grow as a result of the ageing of populations and the rising burden of non- communicable diseases and some communicable diseases. Benefit- Early delivery of palliative care reduces unnecessary hospital admissions and the use of health services. Palliative care involves a range of services delivered by a range of professionals Why do Organizations Need Palliative Care? 1. 2. 3. Concentration of risk for poor quality and spending lies in a small subset of patients Strong evidence that palliative care improves quality, satisfaction, and cost appropriateness There are very few strategies that simultaneously improve quality and reduce spending Palliative Care Drives a Positive Patient Experience Palliative Care Improves Cost Effectiveness Who is palliative care for? Who is palliative care for? Who receives Palliative Care? Palliative care is an interdisciplinary medical caregiving approach aimed at optimizing quality of life and mitigating suffering among people with serious, complex illnesses such as Cancers- breast, cervix, lung, oral, Cardiovascular disease -Congestive heart failure (CHF), Neurological disorders - Amyotrophic Lateral Sclerosis (ALS) HIV/AIDS Chronic obstructive pulmonary disease (COPD), Alzheimer Issues addressed in palliative care Palliative care can address a broad range of issues, integrating an individual’s specific needs into care. The physical and emotional effects of cancer and its treatment may be very different from person to person. Physical – Emotional and coping – Practical – Spiritual Issues addressed in palliative care Physical: Physical symptoms such as pain, fatigue, loss of appetite, nausea, vomiting, shortness of breath, and insomnia can be relieved with medicines or by using other methods, such as nutrition therapy, physical therapy, or deep breathing techniques. Emotional and coping: Depression, anxiety, and fear that can be addressed through palliative care. Experts may provide counseling, recommend support groups, hold family meetings, or make referrals to mental health professionals. Issues addressed in palliative care Practical: – Patients may have financial and legal worries, insurance questions, employment concerns, and concerns about completing advance directives. For many patients and families, the technical language and specific details of laws and forms are hard to understand. Spiritual: – An expert in palliative care can help people explore their beliefs and values so that they can find a sense of peace or reach a point of acceptance that is appropriate for their situation. Key Components of Palliative Care Recognizing symptoms such as pain, nausea, fatigue, breathing or swallowing difficulties, constipation, and hopelessness. Identifying the patient's goals and development of a palliative care plan, specially for the patient. Understanding that many patients and their families struggle to make decisions. Assisting with advanced care directives to help people formulate and communicate their preferences regarding care during future incapacity. Models of Palliative Care Hospice Care – a well-established program to provide patients with a prognosis of six months or less. These services can be provided in the home, nursing home, residential facility, or on an inpatient unit. Palliative Care Programs – institutional based programs in the hospital or nursing home to serve patients with life-threatening or life-limiting illnesses. Provide services to patients anywhere along the disease continuum between initial diagnosis and death. Outpatient Palliative Care Programs – occur in ambulatory care settings to provide continuity of care for patients with serious or life-threatening illnesses. Community Palliative Care Programs – occur in communities as consultative teams who collaborate with hospices or home health agencies to support seriously ill patients Domains of Quality Palliative Care Domain 1: Structure and Processes of Care Domain 2: Physical Aspects of Care Domain 3: Psychological and Psychiatric Aspects of Care Domain 4: Social Aspects of Care Domain 5: Spiritual, Religious and Existential Aspects of Care Domain 6: Cultural Aspects of Care Domain 7: Care of the Imminently Dying Patient Domain 8: Ethical and Legal Aspects of Care Domains of Quality Palliative Care 1. Structure and Processes of Care -interdisciplinary team assessment based on patient/family goals of care; prognosis; disposition (level of care – inpatient unit, home); safety 2. Physical Aspects of Care – pain, dyspnea, nausea/vomiting, fatigue, constipation, performance status, medical diagnoses, medications (add/wean) 3. Psychological Aspects of Care – anxiety, depression, delirium, cognitive impairment; stress, anticipatory grief, coping strategies; pharm/non-pharm treatment; patient/family grief/bereavement; 4. Social Aspects of Care – family/friend communication/interaction/support; caregiver crisis Domains of Quality Palliative Care 5. Spiritual Aspects of Care – spiritual/religious/existential; hopes/fears; forgiveness; 6. Cultural Aspects of Care – language, ritual, dietary, other. 7. Care of the Imminently Dying – presence; recognition and communication to patient/family education/normalization; prognosis (eg hours to days; very few days; etc) 8. Ethical & Legal Aspects of Care – decision maker; advance directives PRINCIPLES OF PALLIATIVE CARE MANAGEMENT Scope of care: Includes patients of all ages with life-threatening illness, conditions or injury requiring symptom relief from physical, psychosocial and spiritual suffering. Timing of palliative care: Palliative care should ideally begin at the time of diagnosis of a life threatening condition and should continue through treatment until death and into the family’s bereavement. Patient and family centred care: The patient and family constitute the unit of care which should be managed as a whole. PRINCIPLES OF PALLIATIVE CARE MANAGEMENT Holistic care: Palliative care must endeavour to alleviate suffering in the physical, psychological, social and spiritual domains of the patient in order to provide the best quality of life for the patient and family. Multidisciplinary care: A multidisciplinary team approach is essential to address all relevant areas of patient care. Effective communication: Good communication skills (including listening, providing information, facilitating decision making and coordinating care) are essential tools in palliative care and healthcare providers must develop this in order to provide effective palliative care. PRINCIPLES OF PALLIATIVE CARE MANAGEMENT Knowledge and Skills: Palliative care is active care and requires specific management for specific conditions. Seamless care: Palliative care is integral to all healthcare settings (hospital, emergency department, health clinics and homecare). How is palliative care provided? Who Provides Palliative Care? Usually provided by a team of individuals , Interdisciplinary group of professionals Who Provides Palliative Care? Nurses Therapists Pharmacists Physicians Patient and Family Home Health Aides Spiritual Counselors Social Workers Volunteers Approaches to Palliative Care Not a “one size fits all approach” Care is tailored to help the specific needs of the patient Since palliative care is utilized to help with various diseases, the care provided must fit the symptoms. Palliative Care Patient Support Services Three categories of support: 1. Pain management is vital for comfort and to reduce patients’ distress. Health care professionals and families can collaborate to identify the sources of pain and relieve them with drugs and other forms of therapy. Palliative Care Patient Support Services Three categories of support: 2. Symptom management involves treating symptoms other than pain such as nausea, weakness, bowel and bladder problems, mental confusion, fatigue, and difficulty breathing Palliative Care Patient Support Services Three categories of support: 3. Emotional and spiritual support is important for both the patient and family in dealing with the emotional demands of critical illness. For example, someone is diagnosed with breast cancer and is recommended to start chemotherapy and radiation treatments. The patient knows that chemotherapy will take a toll on their body. The patient is referred to a palliative care program for symptom management and receives treatment of their chemotherapy induced nausea and fatigue. Also, the patient is visited by a Medical Social Worker who helps them make good medical decisions. The patient may also receive weekly visits from a chaplain who prays with them and discusses theological questions. In this way the quality of life for this individual is greatly improved from the assistance received from a palliative care team. What does Palliative Care Provide to the Patient? Helps patients gain the strength and peace of mind to carry on with daily life Aid the ability to tolerate medical treatments Helps patients to better understand their choices for care What Does Palliative Care Provide for the Patient’s Family? Helps families understand the choices available for care Improves everyday life of patient; reducing the concern of loved ones Allows for valuable support system Where to find Palliative Care? In most cases, palliative care is provided in the hospital. The process begins when doctors refer individuals to the palliative care team. In the hospital, palliative care is provided by a team of experts. Settings for Palliative Care Outpatient practice Hospital Inpatient Unit based Consultation Team Home care Nursing Home Hospice PALLIATIVE CARE PLAN Palliative care plan includes – care goals – symptom management – advance care planning – financial planning – family support – spiritual care – functional status support and rehabilitation – co morbid disease management BARRIERS IN AVAILING PC Inadequate training of health care personnel in symptom management & other End of life skills Inadequate standards of care Lack of accountability in the care of dying patients Lack of appropriate information & resources Lack of investment in research pertaining to palliative & end of life care Barriers to the development of palliative care It includes, - poverty - population density - geographic distances - opioid availability - work force development and - limited national palliative care policy Palliative care developments around the world The rise of hospice and palliative care in its distinctly modern guise (combining clinical care, education, and research) is generally traced to the late 1950s and early 1960s. A 1999 listing of palliative care organizations with a global perspective also includes, - British Aid for Hospices Abroad - the Hospice Education Institute - WHO Collaborating Centre for Palliative Cancer Care, Oxford - Other groups include WHO experts and international collaborators and WHO collaborating centres in Milan, Saitama, and Wisconsin. Palliative care developments around the world It is estimated that hospice or palliative care services now exist, or are under development, on every continent of the world, in around 100 countries The total number of hospice or palliative care initiatives is in excess of 8000 and these include – inpatient units – hospital-based services – community-based teams – day care centres, and – other modes of delivery Palliative care developments around the world International associations and initiatives in support of hospicepalliative care 1973 International Association for the Study of Pain, founded Issaquah, Washington, USA 1976 First International Congress on the Care of the Terminally Ill, Montreal, Canada 1980 International Hospice Institute, became International Hospice Institute and College (1995) and International Association for Hospice and Palliative Care (1999) 1982 World Health Organization Cancer Pain and Palliative Care Palliative care developments around the world 1990 Hospice Information Service, founded at St Christopher‘s Hospice, London, UK 1998 1998 - Poznan Declaration leads to the foundation of the Eastern and Central European Palliative Task Force (1999) 1999 Foundation for Hospices in Sub-Saharan Africa founded in USA 2000 Latin American Association of Palliative Care founded 2001 Asia Pacific Hospice Palliative Care Network founded 2002 UK Forum for Hospice and Palliative Care Worldwide founded by Help the Hospices HISTORICAL PERSPECTIVES OF HOSPICE CARE The term first developed from the word hospitality by a physician Dame Cicely Saunders in the year 1960 for dying patients, who is the founder of the First modern hospice St.Christopher‘s in London 1969 – Psychiatrist Elizabeth Kubler Ross explained about 5 stages of death in his book -on death and dying- which emphasis the need of death and dying PALLIATIVE CARE IN TURKEY Palliative care expanded with The Pallia-TURK (Palya-Tuerk) project, which is considered one of the most important building blocks in Turkey. PALLIATIVE CARE IN TURKEY It has 437 Palliative Care Center with a total number of beds of 6,397 Thank you End of Life Care Dr. Meryem ERCEYLAN What is end of life care? End of life care involves treatment, care and support for people who are thought to be in the last year of life. End of life care This type of care does not happen only in the moments before breathing ceases and the heart stops beating. Older people often live with one or more chronic illness and need significant care for days, weeks, and even months before death. End of life care Focuses on physical & psychosocial needs for the person & their family Goals Provide Comfort & supportive care during the dying process Improve the quality of their remaining life Help ensure dignified death End of life care End of life care should help patient to live as well as possible until patient die and to die with dignity. The people providing patient's care should ask patient about patient's wishes and preferences and take these into account as they work with patient to plan patient's care. They should also support patient family, carers or other people who are important to patient. End of life care Patient have the right to express patient's wishes about where patient would like to receive care and where patient want to die. Patient can receive end of life care at home, in a care home, hospice or be cared for in hospital, depending on patient's needs and preference. People who are approaching the end of their life are entitled to highquality care, wherever they're being cared for. What does end of life care involve? End of life care aims to help patient to live as comfortably as possible in the time patient has left. It can involve: managing physical symptoms helping with everyday tasks, such as washing or dressing giving patient emotional support talking about patient's needs and wishes, including anything patient's family and friends need to know getting practical support with things like making a Will or financial support. What does end of life care involve? Some of these conversations can be difficult. But if patient has not thought or talked about what patient want from end of life care, now is the time to do it. Putting plans or wishes in place means it's more likely patient will has the experience patient want. This might include where patient would like to be cared for, and where patient would prefer to die. Is end of life care different to palliative care? End of life care is a part of palliative care. But palliative care as a whole can last for much longer and is broader. Patients may have been having palliative care for some time before getting end of life care. Who provides end of life care? End of life care can be provided by different professionals, depending on where patient are living or staying. This could include a district nurse, healthcare assistant or staff in a hospital or hospice. Where is end of life care given? Patients may have end of life care in different places, including: patient's home a hospital a care home or nursing home a hospice. What are the needs in end-of-life care? Generally speaking, people who are dying need care in four areas: ▪ physical comfort, ▪ mental and emotional needs, ▪ spiritual needs, ▪ and practical tasks. End of life: Providing physical comfort Discomfort during the dying process can come from a variety of sources. Depending on the cause of the discomfort, there are things family or a health care provider can do to help make the dying person more comfortable. For example, the person may be uncomfortable because of: Pain Breathing problems Skin irritation, including itching Digestive problems Temperature sensitivity Fatigue End of life: Providing physical comfort Pain. Not everyone who is dying experiences pain. For those who do, experts believe that care should focus on relieving pain without worrying about possible long-term problems of drug dependence or abuse. Struggling with severe pain can be draining and make the dying person understandably angry or short-tempered. This can make it even harder for families and other loved ones to communicate with the person in a meaningful way. End of life: Providing physical comfort Pain. Caregivers and other family members can play significant roles in managing a dying person’s pain. But knowing how much pain someone is in can be difficult. Watch for clues, such as trouble sleeping, showing increased agitation, or crying. Don’t be afraid of giving as much pain medicine as is prescribed by the doctor. Pain is easier to prevent than to relieve, and severe pain is hard to manage. Tell the health care professionals if the pain is not controlled because medicines can be increased or changed. Palliative medical specialists are experienced in pain management for seriously ill patients, consider consulting with one if they’re not already involved. End of life: Providing physical comfort Breathing problems. Shortness of breath or the feeling that breathing is difficult is a common experience at the end of life. This might call this dyspnea. To help ease breathing for your loved one, try raising the head of the bed, opening a window, using a humidifier, or using a fan to circulate air in the room. Sometimes, morphine or other pain medications can help relieve the sense of breathlessness. End of life: Providing physical comfort Breathing problems. There may be times when a dying person has an abnormal breathing pattern, known as Cheyne-Stokes breathing. The person’s breathing may alternate between deep, heavy breaths and shallow or even no breaths. Some people very near death might have noisy breathing, sometimes called a death rattle. In most cases, this noisy breathing does not upset the dying person, though it may be alarming to family and friends. You may try turning the person to rest on one side or elevating their head. Prescription medicine may also help. End of life: Providing physical comfort Skin irritation. Skin problems can be very uncomfortable for someone when they are dying. Keep the person’s skin clean and moisturized. Gently apply alcoholfree lotion to relieve itching and dryness. Dryness on parts of the face, such as the lips and eyes, can be a common cause of discomfort near death. These tips may help: ✓Keep their lips moist with lip balm and their mouth clean with a soft, damp cloth. ✓Gently dab an eye cream or gel around the eyes. ✓Try placing a damp cloth over the person’s closed eyes. ✓If the inside of the mouth seems dry, giving ice chips (if the person is conscious) or wiping the inside of the person’s mouth with a damp cloth, cotton ball, or specially treated swab might help End of life: Providing physical comfort Skin irritation. Sitting or lying in one position can put constant pressure on sensitive skin, which can lead to painful bed sores (called pressure ulcers). When a bed sore first forms, the skin gets discolored or darker. Watch carefully for these discolored spots, especially on the heels, hips, lower back, and back of the head. Turning the person in bed every few hours may help prevent bed sores and stiffness. Try putting a foam pad under the person’s heel or elbow to raise it off the bed and reduce pressure. Ask a member of your health care team if a special mattress or chair cushion might also help. End of life: Providing physical comfort Digestive problems. Nausea, vomiting, constipation, and loss of appetite are common issues at the end of life. Swallowing may also be a problem. The causes and treatments for these symptoms vary, so talk to a doctor or nurse about what you’re seeing. Medicines can control nausea or vomiting or relieve constipation, all of which are common side effects of strong pain medications. End of life: Providing physical comfort Digestive problems. If the person loses their appetite, try gently offering favorite foods in small amounts. Serve frequent, smaller meals rather than three larger ones. Help with feeding if the person wants to eat but is too tired or weak. But don’t force a dying person to eat. Losing one’s appetite is a common and normal part of dying. Going without food and/or water is generally not painful. A conscious decision to give up food can be part of a person’s acceptance that death is near. End of life: Providing physical comfort Temperature sensitivity. When a person is closer to death, their hands, arms, feet, or legs may be cool to the touch. Some parts of the body may become darker or blueish. People who are dying may not be able to tell you that they are too hot or too cold, so watch for clues. End of life: Providing physical comfort Temperature sensitivity. For example, someone who is too warm might repeatedly try to remove a blanket. You can remove the blanket and place a cool cloth on the person’s head. Hunching their shoulders, pulling the covers up, and shivering can be signs the person is cold. Make sure there is no draft, raise the heat, and add another blanket. Avoid electric blankets because they can get too hot. End of life: Providing physical comfort Fatigue. It is common for people nearing the end of life to feel tired and have little or no energy. Keep things simple. For example, a bedside commode can be used instead of walking to the bathroom. Providing a stool so the person can sit in the shower, or sponge baths in bed can also help. End of life: Managing mental and emotional needs End-of-life care can also include helping the dying person manage mental and emotional distress. Someone who is alert near the end of life might understandably feel depressed or anxious. It is important to treat emotional pain and suffering. You might want to contact a counselor, possibly one familiar with end-oflife issues, to encourage conversations about feelings. Medicine may help if the depression or anxiety is severe. End of life: Managing mental and emotional needs The dying person may also have some specific fears and concerns. He or she may fear the unknown, or worry about those left behind. Some people are afraid of being alone at the very end. These feelings can be made worse by the reactions of family, friends, and even the medical team. For example, family and friends may not know how to help or what to say, so they stop visiting, or they may withdraw because they are already grieving. Doctors may feel helpless and avoid dying patients because they cannot help them further. End of life: Managing mental and emotional needs And some people may experience mental confusion and may have strange or unusual behavior, making it harder to connect with their loved ones. This can add to a dying person's sense of isolation. End of life: Managing mental and emotional needs Here are a few tips that may help manage mental and emotional needs: Provide physical contact. Try holding hands or a gentle massage. Set a comforting mood. Some people prefer quiet moments with less people. Use soft lighting in the room. Play music at a low volume. This can help with relaxation and lessen pain. Involve the dying person. If the person can still communicate, ask them what they need. Be present. Visit with the person. Talk or read to them, even if they can’t talk back. If they can talk, listen attentively to what they have to say without worrying about what you will say next. Your presence can be the greatest gift you can give to a dying person. Spiritual needs at the end of life For people nearing the end of life, spiritual needs may be as important as their physical concerns. Spiritual needs may include finding meaning in one's life, ending disagreements with others, or making peace with life circumstances. The dying person might find comfort in resolving unsettled issues with friends or family. Visits from a social worker or a counselor may help. Many people find solace in their faith. Others may struggle with their faith or spiritual beliefs. Praying, reading religious texts, or listening to religious music may help. The person can also talk with someone from their religious community, such as a minister, priest, rabbi, or imam. Spiritual needs at the end of life Family and friends can talk to the dying person about the importance of their relationship. For example, adult children may share how their father has influenced the course of their lives. Grandchildren can let their grandfather know how much he has meant to them. Friends can share how they value years of support and companionship. Family and friends who can't be present in person can send a video or audio recording of what they would like to say, or a letter to be read out loud. Spiritual needs at the end of life Sharing memories of good times is another way some people find peace near death. This can be comforting for everyone. Some doctors think that dying people can still hear even if they are not conscious. Always talk to, not about, the person who is dying. When you come into the room, identify yourself to the person. You may want to ask someone to write down some of the things said at this time — both by and to the person who is dying. In time, these words might serve as a source of comfort to family and friends. Spiritual needs at the end of life There may come a time when a dying person who has been confused suddenly seems to be thinking clearly. Take advantage of these moments but understand that they are likely temporary and not necessarily a sign of getting better. Sometimes, a dying person may appear to see or talk to someone who is not there. Resist temptation to interrupt or correct them, or say they are imagining things. Give the dying person the space to experience their own reality. Sometimes dying people will report having dreams of meeting deceased relatives, friends, or religious figures. The dying person may have various reactions to such dreams, but often, they are quite comforting to them. Providing support for practical tasks Many practical jobs need to be done at the end of life — both to relieve the person who is dying and to support the caregiver. A person who is dying might be worried about who will take care of things when they are gone. A family member or friend can offer reassurance — "I'll make sure your African violets are watered," "Jessica has promised to take care of Bandit," "Dad, we want Mom to live with us from now on" — which may help provide a measure of peace. You also may remind the dying person that their personal affairs are in good hands. Providing support for practical tasks Everyday tasks can also be a source of worry for someone who is dying and can overwhelm a caregiver. A family member or friend can provide the caregiver with a muchneeded break by helping with small daily chores around the house such as picking up the mail, writing down phone messages, doing a load of laundry, feeding the family pet, or picking up medicine from the pharmacy. Providing support for practical tasks Caregivers may also feel overwhelmed keeping close friends and family informed. A family member or friend can help set up an outgoing voicemail message, a blog, an email list, a private Facebook page, or even a phone tree to help reduce the number of calls the caregiver must make. Providing support for practical tasks Providing comfort and care for someone at the end of life can be physically and emotionally exhausting. If you are a primary caregiver, ask for help when you need it and accept help when it's offered. Don't hesitate to suggest a specific task to someone who offers to help. Friends and family are usually eager to do something for you and the person who is dying, but they may not know what to do. Providing support for practical tasks In the end, consider that there may be no “perfect” death so just do the best you can for your loved one. The deep pain of losing someone close to you may be softened a little by knowing that, when you were needed, you did what you could. Death occurs when all vital organs and systems cease to function. It is the irreversible cessation of circulatory & respiratory functions or the irreversible cessation of all functions of all functions of the entire brain including the brain stem. Physical Manifestations Sensory System Hearing Usually the last to go Touch Decreased sensation & perception of pain/touch Taste & Smell Decreased with disease progression Vision Blurring of vision & glazing of eyes Blink reflex absent & eyelids remain half open Integumentary System Mottling on extremities Cold clammy skin Cyanosis on nose, nail beds, knees Respiratory System Increased respiratory rate Cheyne-Stokes Breathing (periods of apnea & deep rapid breathing) Inability to cough or clear secretions causing grunting, gurgling, or noisy congested breathing Irregular breathing, gradually slowing down to terminal gasps Urinary System Gradual decrease in UOP Incontinent of urine or unable to urinate Gastrointestinal System Slowing of GI tract & possible cessation (side effect of pain medications) Accumulation of gas Distention & nausea Incontinence due to loss of sphincter control BM may occur before imminent death or at time of death Musculoskeletal System Gradual loss of ability to move Sagging of jaw resulting from loss of facial muscle tone Swallowing can become more difficult Difficulty maintaining body posture & alignment Loss of gag reflex For patient on large doses of pain medication (opioids) will might see jerking Cardiovascular System Increased heart rate Later slower & weakening pulse Irregular rhythm The Dying Person May Need to Talk (There are some things they may not want to discuss with family) Express Feelings Share Worries & Concerns Just Be There (Don’t feel you need to talk) Silence is OK Therapeutic Touch Your Personal Attitude about Death will influence the way you provide care Report Abnormals to Nurse The Family of the Dying Person May need to talk express feelings, share worries, and concerns away form the dying patient. They may just need you to listen. They may require a private area to talk & make decisions The focus is often on the patient & they often neglect their own needs May need to get them pillows, blankets & a place to sleep Meals if necessary Chaplain Report anything significant said by the family to the nurse Hospice care involves a team-oriented approach from expert medical care, pain management, and emotional and spiritual support expressly tailored to the patient's needs and wishes. Support is provided to the patient's loved ones as well. At the center of hospice and palliative care is the belief that each of us has the right to die pain-free and with dignity, and that our families will receive the necessary support to allow us to do so. Responsibilities Comfort measures (comfort care) to provide for a person & family at the end of life Pain management Report pain to the nurse Bathe, reposition, etc. Music Touch Hold a hand Gentle Massage Hand on visitors shoulder Religious needs Visit from chaplain Reading of scripture Snacks & drinks for visitors Supportive presence Non-aggressive medical treatment Skill: Provide comfort measures for the person at end-of-life or on hospice care (see previous slide) Skill: Removal of non-surgically inserted tubes and devices from post-mortem person Post-Mortem Care begins when the person is pronunced dead Maintain privacy & treat with dignity Done to maintain good appearance of the body Discoloration & skin damage are prevented Bathe patient as needed (often incontinent) Position body in normal alignment Rigor mortis begins 2-4 hours after death Stiffness or rigidity of skeletal muscles Removal non-surgically inserted tubes & devices Under direction of nurse. Some patients have to be cleared by Organ Donation The decision to donate may be made by the person before death or by immediate family members after death. Nurses my delegate specific tasks as allowed THANK YOU Advance Care Planning: an idea that has come of age? Dr. Meryem ERCEYLAN Demographic changes Optimising communication Advance Care Planning Facilitating choice Avoiding inappropriate hospital admission Timely access to palliative care Realistic medicine Definitions Advance care planning Anticipatory care planning Advance directives What is Advance Care Planning (ACP)? An approach used to facilitate discussion and documentation of personal wishes including preferred place of care in the last days of life Can be used to anticipate needs which may arise when the person concerned no longer has the capacity to make decisions about his or her own care (Connolly, Milligan et al 2015). Features of ACP Ongoing discussion Involvement of patient, clinician/wider team, family member(s) Explores context including beliefs, understandings, hopes and expectations Addresses patient-related information needs Usually covers care at the end of life Usually results in a document Founded on a good therapeutic relationship. Anticipatory Care Planning Described as adopting a ‘thinking ahead’ philosophy of care that allows practitioners and their teams to work with people and those close to them to set and achieve common goals that will ensure the right thing is being done at the right time by the right person(s) with the right outcome. Commonly applied to support those living with a long term condition to plan for an expected change in health or social status. It also incorporates health improvement and staying well. Usually results in completion of a common document called an anticipatory care plan (The Scottish Parliament 2015). Advance Directives Legal documents that allow patients to put their healthcare wishes in writing, or to appoint someone they trust to make decisions for them, if they become incapacitated (Miller 2017). Examples include: Advance Directive (or Decision) to Refuse Treatment (ADRT) Living Will Enduring Power of Attorney.. Some research around ACP (1) Advance care planning in elderly hospital patients can deliver: Greater likelihood of end of life care wishes being fulfilled Lower levels of stress and higher levels of satisfaction among family members Detering, Hancock, Reid et al (2010) Australia Advance care planning in out-patients with terminal cancer can result in: No increases in depression or anxiety Lower rates of aggressive interventions Earlier hospice referral Better bereavement experiences for family members Wright, Zheng, Ray et al (2008) US Some research around ACP (2) A concerted approach among hospital patients can deliver: substantial uptake of ACP Cantillo, Corliss, Ashton et al (2017) Hawaii Motivating General Practitioners around ACP can result in: Substantial uptake of ACP Better representation of non-cancer patients Earlier access to palliation Tapsfield, Hall, Lunan et al (2016) Scotland Good practice in ACP Start as early as possible, while the person is well enough and has sufficient capacity to fully engage (Albayrak, Kahveci, Özkara et al 2014). Make use of triggers to initiate or restart the process (Mullick, Martin and Sallnow 2013). Commit to discover patients’ hopes and fears and to create an individually meaningful framework in which to ground the discussion of goals of care (Rocker et all 2015). “the discussion is equally or more important than any document arising from it” (Ibid).. An example from renal medicine (Rak et al 2017) Disease stage Priorities All stages Involve an interdisciplinary team in the care of patients and their families Constantly review and refine the Advance Care Plan Living with chronic kidney disease Initiate a discussion of goals of care Explore biopsychosocial, cultural and spiritual values Educate patients and their families about the disease process, especially in the context of multiple comorbidities End stage renal disease Review goals of care Consider commencing renal dialysis End of life Review goals of care Consider timing for withdrawal of dialysis An example from respiratory medicine (Rocker et al 2015) Build on an existing therapeutic relationship Make the ACP conversations themselves part of the care provided Agree on broad goals of care Explore reliable, alternative, integrated models of care attuned to the person’s individual needs Make particular plans for dealing with dyspnoea crises (breathlessness attacks) in the form of a written graduated course of interventions Share ACP insights with other team members to ensure a broad supportive approach. Challenges associated with ACP Personal choice Cultural sensitivities One or more parties “not ready” Locating the ACP when we need it Issues around consent and sharing Who “owns” the ACP A Scottish ACP timeline Pre 2008: ACP was already an element of the Gold Standards Framework for palliative care in the community 2008: Publication of Living and Dying Well: a national action plan for palliative and end of life care in Scotland and the setting up of a short-life working group (SLWG) on ACP. 2009: Publication of position paper from SLWG on ACP 2010: Roll out of NHS Education Scotland Advance / Anticipatory Care Planning training pack 2012: Incorporation of the Key Information Summary (KIS) into Scottish GP contract requirements 2013: Widespread adoption of eKIS to improve sharing of the wishes of community patients 2015: Publication of Strategic Framework for Action on Palliative and End of Life Care with commitment to support ACP through eHealth systems 2016: Launch of “Let’s think ahead – My ACP” app 2017: Establishment of a national Anticipatory Care Toolkit including “My Anticipatory Care Plan” http://ihub.scot/media/2207/my-acp.pdf Demographic changes Optimising communication Advance Care Planning Facilitating choice Avoiding inappropriate hospital admission Timely access to palliative care Realistic medicine Projected change in age structure of Scottish population 2014 to 2039 (National Records of Scotland 2015). Percentage of 530 community patients identified for palliative care and referred to specialist palliative care (from Zheng et al 2013) Cancer Organ failure Dementia / Frailty Number 200 170 160 Identified for palliative care 75% 19% 20% Referred to specialist palliative care 69% 11% 5% Diagnosis Place of death (all causes) in Scotland in 2016 (ISDS) Care home 14% Home 23% Hospice 4% Hospital 59% An idea that has come of age? Although not without its flaws, Advance Care Planning has the potential to help us work with patients and their families to start addressing some of the major challenges facing palliative care in the 21st Century. References Advance Care Planning in Australia, https://www.youtube.com/watch?v=2JR-Muf1N6g. Albayrak, T., Kahveci, R., Özkara, A., and Kasim, I. (2014). The future of elderly care in Turkey. The British Journal of General Practice. Vol. 64(618), pp. 14–15. http://doi.org/10.3399/bjgp14X676320 Bollig, G., Gjengedal, E. and Rosland, J.H. (2016) They know!—Do they? A qualitative study of residents and relatives views on advance care planning, end-of-life care, and decision-making in nursing homes. Palliative Medicine. Vol. 30(5), pp. 456–470. Cantillo, M., Corliss, A., Ashton, M., Kimata, C. and Ruiz, J. (2017) Honoring Patient Choices With Advance Care Planning. Journal of Hospice and Palliative Nursing. Vol. 19(4), pp. 304-311. Connolly, J., Milligan, S., Stevens, E., Jackson, S. and Rooney, K. (2015) Advance care planning in a community setting. Nursing Standard. Vol. 29(23), pp. 43-51. Holley, J.L. and Davison, S.N. (2015) Advance care planning for patients with advanced CKD: A need to move forward. Clin J Am Soc Nephrol. Vol 10, pp. 344-346. doi: 10.2215/CJN.00290115 https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4348671/ Jackson S, MacDonald H, Milligan S, Milton L, Reid N and Stevens E (2010) Advanced / Anticipatory Care Planning: facilitators’ training pack. Six Hospices Education Consortium / NHS Education Scotland. Glasgow. Lovell, A. and Yates, P. (2017) Advance Care Planning in palliative care: A systematic literature review of the contextual factors influencing its uptake 2008–2012. Palliative Medicine. Vol. 28(8), pp. 1026–1035 [online]. Available: http://journals.sagepub.com/doi/pdf/10.1177/0269216314531313 Miller, B. (2017) Nurses in the Know: The History and Future of Advance Directives. Online Journal of Issues in Nursing. Vol. 22(3) [online]. Available: http://www.nursingworld.org/MainMenuCategories/ANAMarketplace/ANAPeriodicals/O JIN/TableofContents/Vol-22-2017/No3-Sep-2017/Articles-Previous-Topics/History-andFuture-of-Advance-Directives.html Moss, A.H. (2016) Chapter 19: Palliative Care in patients with kidney disease and cancer. Onco-Nephrology Curriculum. American Society of Nephrology [online]. Available: https://www.asn-online.org/education/distancelearning/curricula/onco/Chapter19.pdf Mullick A, Martin J and Sallnow L. (2013) An introduction to advance care planning in practice. BMJ 2013; 347: f6064. DOI: 10.1136/bmj.f6064. Mullick, A. (2018) Advanced care planning: an illusion of choice [Online]. Available: https://blog.oup.com/2018/01/advance-care-planning-illusion-of-choice/ NHS England (2014) Your life—your choice, https://www.nescn.nhs.uk/wpcontent/uploads/2014/05/Deciding-Right-Strategy-doc-0414.pdf Rak, A., Raina, R., Suh, T.T., Krishnappa, V., Darusz, J., Sidoti, C.W. and Gupta, M. (2017) Palliative care for patients with end-stage renal disease: approach to treatment that aims to improve quality of life and relieve suffering for patients (and families) with chronic illnesses. Clinical Kidney Journal. Vol. 10(1), pp. 68–73. https://doi.org/10.1093/ckj/sfw105 Rocker, G.M., Simpson, A.C. and Horton, R. (2015) Palliative care in advanced lung disease: the challenge of integrating palliation into everyday care. Chest. Vol. 148(3), pp. 801-809. Rooney K, Jackson S, Milligan S and Stevens E (2013) The evaluation of the implementation of the advance/anticipatory care process (ACP) in the demonstration site in North Ayrshire: Report. 31st March 2013. Tapsfield, J., Hall, C., Lunan, C., McCutcheon, H., McLoughlin, P., Rhee, J., Leiva, A., Spiller, J., Finucane, A. and Murray, S.A. (2016) Many people in Scotland now benefit from anticipatory care before they die: an after death analysis and interviews with general practitioners. BMJ Supportive and Palliative Care. Vol. 0(1), pp. 1-10. doi:10.1136/bmjspcare-2015-001014 The Scottish Parliament (2015) We need to talk about palliative care. SP Paper 836 - 15th Report, 2015 (Session 4). Health and Sport Committee. Published 25th November 2015 [online]. Available: http://www.parliament.scot/S4_HealthandSportCommittee/Reports/HSS042015R15.pdf Thomas, K. and Lobo, B. (eds) (2011) Advance care planning in end of life care. New York: Oxford University Press, 2011. World Health Organisation (2014) Strengthening of palliative care as a component of integrated treatment within the continuum of care. Eighth meeting, 23 January 2014, EB134.R7. http://apps.who.int/gb/ebwha/pdf_files/EB134/B134_R7-en.pdf Wright, A.A., Zhang, B., Ray, A., Mack, J.W., Trice, E., Balboni, T., Mitchell, S.L., Jackson, V.A., Block, S.D., Maciejewski, P.K. and Prigerson, H.G. (2008) Associations between endof-life discussions, patient mental health, medical care near death, and caregiver bereavement adjustment. Journal of American Medical Association. Vol. 300(14), pp. 1665-1673. doi:10.1001/jama.300.14.1665 Zheng, L., Finucane, A.M., Oxenham, D., et al. (2013) How good is primary care at identifying patients who need palliative care? A mixed methods study. Eur J Palliat Care. Vol. 20.pp. 216–222.