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Hospice Orientation for Inpatient Staff HOSPICE PHILOSOPHY Though people are eligible for Hospice as they are facing the end of their lives, the focus is not so much on death as it is on the quality of the living that is yet to be done. A patient is considered ready for Hospice when he/she has 6 months or less to live (if the disease follows its usual course) and is in agreement with comfort (palliative) care rather than curative care. Choosing Hospice does not mean giving up but rather an acceptance of the inevitable and a change in focus. Often much can be done to improve quality of life even though a cure is no longer possible. Hospice pioneer Dame Cecily Saunders said, “You matter to the last moment of your life and we will do all we can not only to help you die peacefully, but to live until you die.” The goal of Hospice is to help patients (and their families) identify and focus on what is important to them before they die. Assisting them in meeting end of life physical, emotional and spiritual needs enables them to do this. Most patients prefer to stay where they are living at end of life, where they know their caregivers and often think of them as extended family. Though it may be difficult caring for patients who are dying, it is also satisfying to be able to provide for their end of life needs. Hospice is a resource that can help do that. Hospice Care is covered by Medicare, Medical Assistance and most insurances. It pays for all visits made by the Hospice interdisciplinary team – nurse, social worker, chaplain and others who have experience helping patients with end of life issues such as pain and symptom management, sharing and making memories, healing relationships, dealing with spiritual questions, making funeral arrangements or saying good-bye. In addition, it pays for medicines and basic equipment related to their end of life disease. The patient has a choice of which Hospice to use for his/her care. This choice must be provided legally and ethically. The RN Case Manager on the Hospice Team works closely with the patient’s primary physician who approves the admission to Hospice, authorizes the Hospice Admission Orders and directs the patient’s medical care. The Hospice Medical Director does not take the place of the patient’s primary physician. The referral process starts with a phone call to the patient’s (and/or family’s) Hospice of choice. Though Hospice is for the last 6 months of life, the average hospice patient is only on the program for a little over 2 months and many for less than a week. Most patients and their families would benefit by being on Hospice for a longer period of time. If in doubt whether or not a patient is appropriate for Hospice, call the Hospice Admission Team for an assessment. Sooner is better than later for most patients. Hospice Care is always provided to those appropriate for Hospice regardless of ability to pay, disease, age, race, color, handicap, creed or national origin. Hospice depends on memorials, gifts, fundraising and grants to make up the difference between actual Hospice cost and reimbursement. There are 4 levels of care within Hospice which are based on the patient’s needs: 1. Routine Home Care is used when needs can be met with intermittent visits by the Hospice Team and is provided where the resident lives including inpatient facilities. 2. Respite Care is used when care is being provided by the family and they need a break so they can continue caring for their loved one. It may be provided in a Long Term Care Facility. 3. General Inpatient Care is used when symptoms cannot be controlled with intermittent visits by the Hospice Team. It is provided in a hospital or in some Hospice Houses. The patient returns home when symptoms are controlled. 4. Continuous Care is used when General Inpatient Care would be appropriate but the patient wishes to stay at home. Examples of when this might be used are for uncontrolled pain, terminal agitation with safety issues or a rapid terminal decline. Depending on the situation it provides a hospice nurse for 8-24 hours/day until symptoms are controlled. The Pillars is HealthEast’s hospice house where routine home care, respite care or general inpatient care may be provided. It is located in Oakdale, has 8 beds, is staffed 24/7 by Hospice trained staff and was designed and built specifically for patients and families facing the end of life. Hospice aggressively treats pain and other distressing symptoms so the patient as well as the family can focus on what is important to them as they face the challenges of dealing with end of life issues and their own mortality. Hospice care has evolved and improved from a grass roots movement when most care was provided by volunteers. Hospice is now recognized as a professional organization with expertise in palliative care at end of life. Many Hospice staff are certified in Hospice and Palliative Care which is a specialty recognized worldwide. Hospice affirms life, regarding dying as a normal process and neither hastening nor postponing death. PATIENT RIGHTS With an understanding of Hospice Philosophy, it follows that respect for the rights of the patient and family is of critical importance during the sensitive months at the end of life. Summarized below is a list of those rights. An individual receiving Hospice care has the right to: • Receive a Hospice Bill of Rights prior to or at the time of admission to Hospice services. • Receive care according to the Hospice plan of care, and also participate in creating and changing that plan of care. • Be told of changes to the plan of care. • Be told in advance what services are provided, the frequency of visits and the different disciplines furnishing care. • Refuse treatment or services. • Know the limits to services and grounds for termination of services. • Know in advance how payment for Hospice services will be covered. • Receive an estimate of reimbursement the provider expects to receive. • Know there may be other Hospice agencies available in the community. • Choose freely among Hospice providers and may change hospice providers. • Have personal, financial and medical information kept private and receive notice of the agency’s privacy practices. • Be allowed to access their medical record and written information. • Receive care by people properly trained and competent to perform their duties. • Be treated with courtesy and respect, and have their personal belongings treated with respect. • Be free from mistreatment, neglect or verbal, mental, sexual and physical abuse including injury of unknown source and misappropriation of patient property. • Receive reasonable advance notice of changes in services or charges. • Receive a coordinated transfer when changing service provider. • Voice complaints and concerns regarding treatment or care. • Know how to contact the individual responsible for handling problems, and to have the provider investigate and attempt to resolve any grievance or complaint. • Know the name and address of the state or county agency to contact for additional information or assistance. • Assert these rights without retaliation. • Have pain and symptoms managed to the patient’s desired level of comfort. Adhering to the Hospice Patient’s Bill of Rights assures that each patient is given compassionate, quality, individualized care along with the respect and dignity each human being deserves. COMMUNICATIONS Communication between inpatient facility employees and Hospice is vital in meeting the needs and goals identified by the patient and family. Many times if there are problems, a breakdown in communication is responsible. For the sake of the patient and his/her family it is everyone’s responsibility to communicate information. Generally, Hospice will provide the following sources of information: • Face to Face communications take place at admission and at each Hospice staff visit. Visits from the various disciplines vary in kind and number. Nursing visits are made at least every 2 weeks but are usually more frequent. Daily visits are made to acute care patients in an inpatient facility. • Phone communication is ongoing. It begins as plans are made to include Hospice as part of the patient’s plan of care. It continues as information is shared regarding the patient’s condition, changes in physician’s orders, when questions/concerns arise and when circumstances of the patient’s death are communicated. • A list of each patient’s Hospice Team will be provided to the facility along with 24 hour contact information. • The certification/recertification form reflects the primary physician’s and Hospice medical director’s agreement that the patient is appropriate for Hospice services and will include a list of current medications. • The initial plan of care identifies the services the patient and family will receive and the anticipated frequency of visits. • The ongoing plan of care communicates problems, goals and interventions and is carefully coordinated with that of the facility. This plan of care is updated at least every 2 weeks. Please notify Hospice of scheduled care conferences in order to maintain a current plan of care. • Documentation of visits, assessments, problem solving, communications initiated and services provided becomes part of the facility medical record. The Department of Health will be looking for documentation of this information during their surveys. CALL HOSPICE FIRST if there are problems with a Hospice patient. Always notify Hospice if the patient has a significant change in condition, any time questions/concerns arise and at the time of the patient’s death. This is a brief summary of interactions between inpatient care facilities and Hospices. Working together we can provide the best end of life care possible for Hospice patients and their families. COMFORT: PAIN AND SYMPTOM CONTROL HOSPICE AFFIRMS LIFE, REGARDING DYING AS A NORMAL PROCESS AND NEITHER HASTENING NOR POSTPONING DEATH BUT PROVIDING FOR THE COMFORT AND DIGNITY OF THE PATIENT. Hospice aggressively treats pain and other distressing symptoms so the patient as well as the family can focus on what is important to them as they face the challenges of dealing with end of life issues and their own mortality. Comfort care and Hospice care are both used to describe care provided when there is nothing more that can be done to cure or reverse an illness, disease or condition. Symptoms such as pain, shortness of breath, anxiety, nausea and restlessness may develop or worsen. Though cure is no longer possible, there is a great deal that can be done to ease physical discomfort and enhance quality of life. Education and support given to the patient’s family can also provide comfort and peace of mind. Comfort has many dimensions. It includes physical, psychological, social and spiritual well being. The Hospice interdisciplinary team can work together with facility staff to ensure that patients and their families are provided the best possible end of life care including pain and symptom management. The Hospice Interdisciplinary Team includes: Nursing Staff: Registered nurses and licensed practical nurses work collaboratively with facility staff to manage the patient’s physical symptoms and coordinate the comfort driven plan of care. It is important to keep open communication to ensure that facility staff and Hospice staff are working together to assist the patient in meeting end of life goals. The Hospice Case Manager coordinates care for the patient per Medicare regulations. Most hospices work with a set of Hospice Admission Orders which are developed with the Hospice Medical Director and consulting pharmacy. The primary physician reviews these orders and indicates which medications the hospice may initiate to help promote comfort for the patient. Having these hospice orders in place helps to ensure that symptoms are addressed as they develop. The primary physician has given Hospice permission to initiate these orders as needed to manage the symptoms so it is important to notify Hospice when a change in the patient’s condition is assessed. Hospice staff is available around the clock, the patient’s RN case manager during the day, Monday through Friday and Triage nurses at all other times. Call anytime with questions or concerns or to report a change in a patient’s condition. Most of the time a phone consultation will effectively address the issue. The need for a hospice visit will be assessed and one made if needed. Never hesitate to call Hospice. Social Services: Hospice social workers are available to help with the psychosocial needs frequently seen at end of life. They may participate in family conferences along with facility staff to help address concerns, assist in developing advanced directives or answer funeral planning questions. They work in conjunction with the facility social worker to meet patient needs. These needs as well as emotions can be very intense at the end of life and the Hospice Team can provide additional support during this difficult time. Spiritual Care: Frequently spiritual concerns and questions arise at end of life. The Hospice chaplains are available to help answer those questions, to assist patients in reconnecting to their church or to their spirituality and/or to allay fears or spiritual pain. They will work along with the spiritual care providers already involved in the patient’s plan of care as requested. Volunteers: All Hospice volunteers go through Hospice orientation and training (20+ hours). A volunteer may be requested for the patient to help provide socialization and support during the last weeks and months of life. A volunteer usually visits with the patient 4 hours a week. 11th Hour Volunteers: These volunteers sometimes assist at the bedside during the active dying process at the very end of life to provide additional comfort, support and presence to the patient. They undergo special training provided by the hospice and have experience in the dying process. Pain and symptom management at the end of life has a special urgency. The collaborative goal of the facility and Hospice is to address symptoms in a timely manner to preserve quality of life. Under direction of the primary physician, orders can be implemented to help manage the physical and psychological distress often seen at end of life. Hospice case managers coordinate care with the patient, family, primary physician, facility staff and Hospice team to effectively and safely manage symptoms. Working together, a collaborative, individualized plan of care will be developed based on the patient’s specific needs. To summarize: Comfort is multidimensional: Physical, psychological, social and spiritual needs can all impact a person’s quality of life. In-patient facilities and Hospice can partner together with the goal being to provide the best possible comfort care to patients and support to their families during the often stressful time at end of life. PRINCIPLES OF DEATH AND DYING Each death is different depending on the disease, the symptoms and how well the symptoms are controlled. This includes not only physical symptoms but emotional and spiritual symptoms are controlled. “HOW WE DIE REMAINS IN THE MEMORY OF THOSE WHO LIVE ON.” DAME CICELY SAUNDERS It is important to provide aggressive pain and symptom management so the patients are able to focus on what is important to them as they face the challenges of dealing with end of life issues. The use of Morphine, Haldol, Ativan or similar medications allows pain and other symptoms to be controlled. This is not chemical restraint. Controlling distressing symptoms provides not only great benefit to the patient but to the family as well as they are able to look back after the death and know that their loved one died comfortably, peacefully and with dignity. There are common signs and symptoms frequently seen as people get closer to dying. Understanding what is normal and even expected will help to lessen anxieties of family members and caregivers. Not everyone will have all these symptoms (some may have only a few or none at all. Some may die very suddenly) but for most people who are dying it will be a gradual process and many of these signs and symptoms may be seen. SEVERAL WEEKS TO MONTHS BEFORE DEATH: Food and drink become less important. The patient may not be hungry or thirsty as body functions begin to slow down. He/she may sleep more, complain of feeling tired, seem less interested in things and be less talkative. This may indicate that the patient is beginning to prepare for death by thinking about his/her life and death and what is important may be different now. This is all a normal part of the dying process. COMFORT MEASURES: * Respect * Support family regarding changes/ Explain that this is normal * Gently encourage food/fluids * Don’t force food/fluids * Offer smaller servings more frequently * Let patient know it is okay to take only a little or to refuse * Keep mouth moist with sips, ice chips if able or toothettes * Allow patient to refuse activities and to rest/nap as needed ONE TO TWO WEEKS BEFORE DEATH: Changes in vital signs may be noted including blood pressure being lower, pulse more rapid and weaker, respirations irregular. Nailbeds may appear bluish in color or there may be mottling (a splotchy purplish color) of the knees or elsewhere which comes and goes. The patient may experience periods of not breathing lasting 10-60 seconds. This is called “apnea” and will often become more frequent and last longer as death gets closer. There may be congestion. Fever may be present possibly due to dehydration, pneumonia or changes in temperature regulating areas of the brain. There may be confusion or agitation or the patient may be sleeping more and be difficult to arouse at times. Comfort Measures: Notify Hospice with changes in the patient’s condition so that medications etc. from the Hospice Admission Orders can be initiated as needed to facilitate comfort. In addition: • Keep patient clean and dry • Turn, lotion, do mouth care every 2-4 hours as needed • For congestion: Elevating the head of bed or repositioning may help • For fever: Cool cloths or tepid sponge baths, light blanket • For confusion/agitation: familiar people/belongings, soft lighting, calm quiet atmosphere • Of course, medications may be helpful for control of symptoms. Answering the family’s questions is also important as well as letting them know about changes in the patient’s condition. It may be important to them to be present at the time of death if possible. They may want to be a part of caring for the patient. Allowing family to be as involved as they wish to be may help them during the grieving process after the death of their loved one. Sometimes what may at first seem to be confusion is actually part of the dying experience. The person my talk with loved ones who have died or may see angels or hear beautiful music. Almost always these events are talked about very calmly by the person who is dying and seem to provide comfort to him/her. Some may talk very openly about the fact they are dying, others won’t talk about it at all. Others may talk about getting on a bus or train, standing in line or buying tickets, something related to leaving. Again, this is not always confusion but it may be their way of talking about their impending death. COMFORT MEASURES: • Be open to what the patient is telling you • Don’t automatically assume he/she is confused • Ask things like: “What are you seeing or hearing?” “What are you more aware of now?” • Spend quiet time with them if only for a few minutes • If they express fear of dying, find out what frightens them about it: Are they afraid of more pain or difficulty breathing? Are they worried about family members? Are they fearful of what comes after death? • Notify Hospice about these concerns. Depending on the situation it may be a chaplain, social worker and/or nurse who will be the most helpful to the patient at this time, perhaps from hospice, perhaps from the hospital. • Encourage each family member and the patient to spend one to one time together to share whatever they wish the other to hear. • Share the “4 Hospice Gifts” with them – a tool to help families communicate, to say (1) “I’m Sorry”, (2) “I Love You”, (3) “Thank You”, (4) “Good bye. It’s okay for you to go”. DAYS OR HOURS PRIOR TO DEATH: As the patient gets closer to death the radial pulse usually becomes more rapid, weaker and harder to feel, respirations more irregular with increased and longer periods of apnea. Congestion may become worse and constant (death rattle) especially if medications to dry up the secretions have not been used. Skin may become cool and clammy with mottling of the arms, the underside of the body and especially the lower legs. This is a sign that blood circulation is beginning to shut down. The patient may be restless or non-responsive. Eyes may be glassy. Urine output may be decreased and the patient may be incontinent as muscles relax. Pain may increase, decrease or stay the same. COMFORT MEASURES: • Remind family that patient is still able to hear and encourage sharing the “4 Hospice Gifts” if this hasn’t been done previously. • Talk to him/her as you do cares – what day it is, what time, the weather, who is visiting, etc. • Watch for non-verbal signs of pain (restlessness, grimacing, moaning with turns, etc.) and notify Hospice if it continues after PRN medication given. • If patient appears comfortable, continue giving scheduled pain medication so he/she remains comfortable. If concerned about giving scheduled pain medications, please discuss with Hospice before withholding them. • Use incontinent pads or briefs as needed. Notify Hospice of changes in the patient’s condition including discomfort or distressing symptoms. The goal is to provide comfort so the patient is able to die peacefully with respect and dignity and that the family is comforted knowing this. REMEMBER: These signs and symptoms are normal and common in the dying process. Feel free to call Hospice any time with questions or concerns. GRIEF & LOSS “If we have loved, we will grieve. Grief is a natural expression of our love.” Dr. Alan Wolfeldt What is Grief? Grief is the normal process of reacting to a loss. We experience personal loss and change throughout our life such as: • When we relocate. • When there’s a change in relationships including divorce. • If we experience loss of health or mobility. • And then of course, when we experience the death of a loved one. You may experience grief and loss in the workplace. As you become connected with your patients and their families and THEN when the patients die, not only do you lose the relationships with your patients but you often lose your connections to their families. REMEMBER that there is no right or wrong way to grieve. Everyone reacts to grief differently – our reactions are as unique and individual just as our losses are different. Our grief reactions are normal. It is normal for people who are grieving to have a wide range of reactions. Initially we may feel numb and be in shock, even if the death was anticipated. We can’t believe that it is real. We can’t believe that our loved one has died. We may have intense feelings of sadness, loneliness and emptiness. We may experience some anger or feelings of guilt or regret. Or we may have some feelings of relief if our loved one has suffered or been sick a long time. Spiritually, we may struggle to find meaning in our loss. We may need to give or receive forgiveness. Or…because of the death of our loved one, we may feel more spiritually connected. We respond physically to grief. We may have difficulty sleeping and eating or we may sleep or eat too much. We may experience fatigue, exhaustion or restlessness – stomachaches, headaches and body pains. Cognitively we may have difficulty concentrating. Our thinking may be fuzzy and disorganized. We may be preoccupied with thoughts of our loved one and their final days. Often times we hear people say, “At times it feels like I’m going crazy!” Initially, we may withdraw from family, friends and social activities because grieving takes a lot of energy. How Long Does Grief Last? Grief lasts as long as it takes you to accept and learn to live with your loss. Even years after a loss, we may experience sadness, especially at special events such as graduations, a family wedding or the birth of a child. We no longer think of grief as a series of stages, but rather more like a roller coaster – full of many ups and downs – highs and lows. Grief is a journey we must go through. We can’t go over it or around it. We shouldn’t put it on the back shelf because it will wait for us. It is important that we deal with our pain as it relates to our grief and loss. And our hope is – that over time, as we work through our grief, the pain will lessen. That doesn’t mean that we have forgotten or stopped loving the person we lost. But rather…it means that we can remember without so much pain. What Can I Do to Help Myself and Others as We Grieve? Acknowledge and accept that you are grieving Be gentle with yourself as you grieve Be gentle with others who are also grieving Avoid being judgmental – remember…that each person grieves in their own way and in their own time. Grief needs expression. We can’t ignore our pain. We can’t just snap out of it. We need to communicate our feelings. Tell others what you need and want. Gently listen to each other. Offer to help others if you see that they are having a difficult day. Be specific and follow-up with an action. Create healthy memories – talk and reminisce. Take time to remember – this is all a part of healing. Say thank you and goodbye. Attend the funeral or memorial service. Send your families a note saying, “I remember when…” And remember, if it was a difficult situation, talk about it – don’t fight about it. Remember to take good care of yourself. Balance home, play, work and rest – laugh and have fun. Seek support. Know who your supports are – Reach out to them – allow them to be a support to you. Remember that asking for help is not a sign of weakness, but rather a sign of strength. If needed, seek professional help. Access your Employee Assistance Program. Talk with a grief counselor or your spiritual adviser. Attend a grief support group. And also, please remember that Hospice is there to be of support to you as staff and to your patients and their families, whether it be through Individual sessions Grief Groups Debriefings Or in-services on grief and loss. Grief is a journey we must go through. But…we don’t have to take the journey through grief alone. Thank you for the compassionate care you provide to your hospice patients and their families especially as they struggle with end of life issues and symptoms and thank you for allowing HealthEast Hospice to partner with you in providing that care.