In-service: End-of-Life Care: Caregiving in the Final Stages of Life Friday, October 10, 2014

Transcription

1 In-service: End-of-Life Care: Caregiving in the Final Stages of Life Friday, October 10, 2014 In the final stages of many terminal illnesses, care priorities tend to shift. Instead of ongoing curative measures, the focus often changes to palliative care for the relief of pain, symptoms, and emotional stress. Ensuring a person's final months, weeks, or days are as good as they can be requires more than just a series of care choices. Anticipating the demands of end-of-life caregiving can help ease the journey from care and grief towards acceptance and healing. Understanding late-stage or end-of-life care End-of-life care is the broad term used to describe the special support and attention given during the period leading up to death, when the goals of care focus on comfort and quality of life. In the final stages of life-limiting illness, it can become evident that in spite of the best care, attention, and treatment, your patient is approaching the end of his or her life. The client's care continues, although the focus shifts to making the client as comfortable as possible. Depending on the nature of the illness and the client s circumstances, this final stage period may last from a matter of weeks or months to several years. During this time, palliative care measures can provide the client with medication and treatments to control pain and other symptoms, such as constipation, nausea, or shortness of breath. Even with years of experience, the last stages of life is always uniquely challenging for caregivers. Hospice Considered to be the model for quality, compassionate care for people facing a life-limiting illness or injury, hospice and palliative care involve a team-oriented approach to expert medical care, pain management, and emotional and spiritual support expressly tailored to the person s needs and wishes. Support is provided to the person's loved ones as well. The focus of hospice relies on the belief that each of us has the right to die pain-free and with dignity, and that our loved ones will receive the necessary support to allow us to do so. Hospice focuses on caring, not curing and, in most cases; care is provided in the person s home. Hospice care also is provided in freestanding hospice centers, hospitals, and nursing homes and other long-term care facilities. Hospice services are available to clients of any age, religion, race, or illness. Hospice care is covered under Medicare, Medicaid, most private insurance plans, HMOs, and other managed care organizations. Palliative Care You may have heard of a new medical term palliative care. For the last thirty years, palliative care has been provided by hospice program for dying clients. This very same approach to care is being used by other healthcare providers, including teams in hospitals, nursing facilities and home health agencies in combination with other medical treatments to help people who are seriously ill. To palliate means to make comfortable by treating a person s symptoms from an illness. Hospice and palliative care both focus on helping a person be comfortable by addressing issues causing physical or emotional pain, or suffering. Hospice and other palliative care providers have teams of people working together to provide care. The goals of palliative care are to improve the quality of a seriously ill person s life and to support that person and their family during and after treatment. Hospice focuses on relieving symptoms and supporting clients with a life expectancy of months not years, 1

2 and their families. However, palliative care may be given at any time during a person s illness, from diagnosis on. Most hospices have a set of defined services, team members and rules and regulations. Some hospices provide palliative care as a separate program or service, which can be very confusing. The list of questions below provides answers to common questions about the difference between hospice and palliative care. Q & A Comparing Palliative Care and Hospice Care Question Palliative Care Hospice Care Who can receive this care? Anyone with a serious illness, regardless of life expectancy, can receive palliative care Someone with an illness with a life expectancy measured in months not years Can I continue to receive treatments to cure my illness? Does Medicare pay? Does Medicaid pay? Does private insurance pay? Is this a package deal? How long can I receive care? What organization provides these services? Where are services provided? Who provides these services? You may receive palliative care and curative care at the same time Some treatments and medications may be covered Some treatments and medications may be covered Some treatments and medications may be covered No, there is no palliative care package, the services are flexible and based on the client s needs This will depend upon your care needs, and the coverage you have through Medicare, Medicaid or private insurance Hospitals Hospices Nursing Facilities Healthcare Clinics Home Assisted living facility Nursing facility Hospital It varies. However usually there is a team including doctors, nurses, social workers and chaplains, similar to the hospice team. Only treatments and medicines aimed at relieving symptoms are provided by hospice Medicare pays all charges related to hospice In most states, Medicaid pays all charges related to hospice Most insurance plans have a hospice benefit Medicare and Medicaid hospice benefits are package deals As long as you meet the hospice s criteria of an illness with a life expectancy of months not years Hospice organizations Hospice programs based out of a hospital Other healthcare organizations Usually, wherever the client resides, in their home, assisted living facility, nursing facility, or hospital. Some hospices have facilities where people can live, like a hospice residence, or receive care for short-term reasons, such as acute pain or symptom management. A team doctor, nurse, social worker, chaplain, volunteer, home health aide and others. Identifying the need for end-of-life care There isn t a single specific point in an illness when end-of-life care begins; it very much depends on the individual. In the case of Alzheimer s disease, the client s doctor likely provided you with information on stages in the diagnosis. These stages can provide general guidelines for understanding the progression of 2

3 Alzheimer s symptoms and planning appropriate care. For other life-limiting illnesses, the following are signs that you may observe or see why client or family members opted about palliative, rather than curative care options: The client has made multiple trips to the emergency room, their condition has been stabilized, but the illness continues to progress significantly, affecting their quality of life They ve been admitted to the hospital several times within the last year with the same or worsening symptoms They wish to remain at home, rather than spend time in the hospital They have decided to stop receiving treatments for their disease Client and family needs in late-stage care Practical care and assistance. Perhaps your client can no longer talk, sit, walk, eat, or make sense of the world. Routine activities, including bathing, feeding, toileting, dressing, and turning may require total support and increased physical strength on the part of the caregiver. These tasks can be supported by private duty aides or personal care assistants, a hospice team, or physician-ordered nursing services. Comfort and dignity. Even if the client s cognitive and memory functions are depleted, their capacity to feel frightened or at peace, loved or lonely, and sad or secure remains. Regardless of location home, hospital, hospice facility the most helpful interventions are those that ease discomfort and provide meaningful connections to their family and loved ones. Respite Care. Respite care can give a family a break from the intensity of end-of-life caregiving. It may be simply a case of having a hospice volunteer sit with the client for a few hours so the family member or significant others can meet friends for coffee or watch a movie, or it could involve the client having a brief inpatient stay in a hospice facility. Grief support. Anticipating your client s death can produce reactions of family from relief to sadness to feeling numb. You may suggest consulting bereavement specialists or spiritual advisors before a person s death can help them and their family prepare for the coming loss. Care and placement options in the final stages of life A terminally ill client s deteriorating medical condition, increased physical safety needs, and the 24-hour demands of final-stage care often necessitate additional in-home help, or for some clients to be placed in a hospice or other care facility. In many cases, clients prefer to remain at home in the final stages of life, in comfortable surroundings with family and loved ones nearby. Changes can be difficult for a terminally ill client, especially one with advanced Alzheimer s disease or other dementia. It s easier for a client to adjust to a new home or care facility before they re at the end stage of their illness. In these situations, planning ahead is important. Hospice and palliative care at home or in a hospice facility Hospice is typically an option for clients whose life expectancy is six months or less, and involves palliative care (pain and symptom relief) to enable your patient to live his or her final days with the highest quality of life possible. Hospice care can be provided onsite at some hospitals, nursing homes, and other health care facilities, although in most cases hospice is provided in the client s own home. With the support of hospice staff and other health care team members, family and loved ones are able to focus more fully on enjoying the time remaining with the client. When hospice care is provided at home, family members may need in-home help like a caregiver, supervised by the client s doctor and hospice medical staff. The hospice team makes regular visits to assess the client and provide additional care and services, such as speech and physical therapy or to help with comfort and other personal care needs. Hospice staff members remain on-call 24 hours a day, seven days a week. 3

4 A hospice team provides emotional and spiritual support according to the wishes and beliefs of the client. They also offer emotional support to the client s family, loved ones and caregivers, including grief counseling. Caregiving in the final stages of life While the symptoms in the final stages of life vary from client to client and according to the life-limiting illness, there are some common symptoms experienced near the end of life that caregivers can provide comfort for. It s important to remember, though, that experiencing any of these symptoms does not necessarily indicate that the client s condition is deteriorating or that death is close. Common Symptoms in End-of-Life Care Symptom Drowsiness Becoming unresponsive Confusion about time, place, identity of people around Loss of appetite, decreased need for food and fluids Loss of bladder or bowel control Skin becoming cool to the touch Labored, irregular, shallow, or noisy breathing How to provide comfort Plan visits and activities for times when the client is most alert. Many clients are still able to hear after they are no longer able to speak, so talk as if he or she can hear. Speak calmly to help re-orient the client. Gently remind the client of the time, date, and people who are with them. Let the client choose if and when to eat or drink. Ice chips, water, or juice may be refreshing if the client can swallow. Keep the client's mouth and lips moist with products such as glycerin swabs and lip balm. Keep the client as clean, dry, and comfortable as possible. Place disposable pads on the bed beneath the client and remove them when they become soiled. Warm the client with blankets but avoid electric blankets or heating pads, which can cause burns. Breathing may be easier if the client's body is turned to the side and pillows are placed beneath the head and behind the back. A cool mist humidifier may also help. Signs and Symptoms A sign is something a caregiver can observe, such as a bed sore or someone struggling to breathe. A symptom is something a client experiences that may not be visible to others, such as pain or fatigue. It is important to look for both signs and symptoms of physical discomfort in someone who is near the end of life. The following signs and symptoms can be reduced or relieved with treatments that can restore comfort: Pain breathing problems digestive problems skin problems feeling too hot or cold fatigue distress dementia delirium 4

5 Breathing Problems It is common for someone at the end of life to feel short of breath or have trouble breathing. Health care providers may use the word dyspnea (disp-nee-uh), which is the medical term for difficult breathing. Struggling to take the next breath can make it hard for someone to talk or interact with others. Some simple ways to make it easier to breathe include: raising the head of a hospital bed or using pillows to raise the person's upper body opening a window adding moisture to the air with a vaporizer running a fan to circulate air, especially blowing the fan towards the person s face turning a person to rest on one side. Sometimes doctors will prescribe morphine or other opioid medications to relieve the sensation of shortness of breath. There is good evidence to support this approach. As people near death, their breathing may become noisier. This is caused by fluids collecting in the throat and large breathing tubes of the lungs, or by the throat muscles relaxing. Sometimes referred to as a death rattle, there may be medicine that can help. The most effective way to help the person who is dying is by changing the position of the body and chest every couple of hours or more frequently. Not all noisy breathing is a death rattle. Digestive Problems People at the end of life sometimes suffer from nausea, vomiting, constipation, and loss of appetite. The causes for such symptoms are varied, so talk to a doctor or nurse right away. There are medicines that can control nausea and vomiting or relieve constipation. Changes in Appetite Losing one s appetite is a common and normal part of dying -- eating near the end of life may actually cause more discomfort than not eating. A conscious decision to give up food and/or water can be part of a person s acceptance that death is near. If someone near the end of life wants to eat, offer small amounts of his or her favorite foods. Frequent, smaller portions of food may have greater appeal than large meals. If the person chooses not to eat despite previously asking for a specific food or meal, do not fret - this is common. Just the act of preparing food can be a great way to express caring and love. Providing liquids or feedings via tubes in veins or in the stomach does not relieve hunger or thirst, so this is not recommended near the end of life. These types of treatments can also cause discomfort rather than helping the person feel better. Cachexia Cachexia (ka-kek-sia) is a wasting syndrome that sometimes occurs with a serious illness such as cancer. It causes weight loss, muscle weakness, fatigue, and loss of appetite. Cachexia cannot be reversed with nutrition and increased food intake. At the present time, there is no cure for cachexia beyond treating the underlying illness. Some drugs are available that increase appetite and potentially improve how a person feels. Skin Problems Problems with skin can cause great discomfort. People at the end of life may be troubled by dryness, tenderness, sores, or feeling too hot or cold. With age, skin becomes drier and more fragile naturally, so it is important to take extra care with an older person s skin. Here are some common skin issues that arise near the end of life and ideas for relieving them. Lips and Eyes. Near death, lips and eyes can become dry. A lip balm may help the lips. The 5

6 inside of the mouth may become dry, too -- ice chips may help if the person is conscious and able to chew. If not, a damp cloth or specially treated swab may be used to wipe the inside of the mouth. For the eyes, a damp cloth placed over closed eyes may help. Dry Skin. For dry skin on the body, gently applying an alcohol-free lotion may relieve the dryness and be soothing. Bed Sores Sitting or lying in one position puts constant pressure on sensitive skin and bony points in the body such as elbows, tailbone, and heels. This can lead to painful bed sores (doctors and nurses may call them pressure ulcers). The first sign of a bed sore is usually a darkened or discolored area. These appear most frequently on heels, hips, the lower back, and the back of the head. Here are some ways to avoid bed sores. Turn the person from side to back and to the other side every few hours. Place a foam pad under an area like a heel or elbow. A special mattress or chair cushion may also help. Keep skin clean and moisturized. Sores that won t heal may require treatment by a specialist. Feeling Too Hot or Cold People who are dying may not be able to tell you that they are too hot or too cold, but you can watch for clues. For example, someone who is too warm may repeatedly push away a blanket. Pulling blankets up, hunching the shoulders, and shivering may be signs that someone is cold. To help, you can try a cool, damp cloth on the forehead of someone who seems too warm. To prevent chills, make sure there are no drafts, raise the heat, and add another blanket. Avoid electric blankets because they can get too hot. A fever can cause a dying person to feel too hot or cold. If you confirm the dying person s temperature is above 98.6, contact his or her health care provider about treating it. Usually a fever-reducing medicine like acetaminophen (Tylenol ) may be offered. Fatigue People near the end of life often feel tired and have little or no energy. This isn t necessarily related to sleep and can be a symptom of the underlying illness and/or the dying process. There are several steps you can take to help a dying person conserve his or her strength. Alternate activity with periods of rest. Try a bedside commode to avoid the need to walk to the bathroom. Use a shower stool or give a sponge bath in bed to avoid the need to stand while showering. Consider if medical testing and treatments are still needed and wanted. Activities such as checking vital signs (pulse, blood pressure, and temperature) and taking IV medicines (intravenous tubes inserted into a vein with a needle to give medicines or fluids) can exhaust a person who is dying. Ask the health care provider if these are still necessary. Avoid moving a dying person to a different place, like a hospital, if possible. A dying person can usually be kept just as comfortable or even more so in his or her own home, especially with home care or hospice support. Sometimes it is recommended that clients get treatments that may improve comfort, such as antibiotics and oxygen; these can also be provided in the home or at a nursing home. A change in location not only drains a dying person s energy, but may also cause confusion and distress. 6

7 Dementia Dementia is a loss of thinking, remembering, and reasoning skills that interferes with a person s daily life and activities. Dementia ranges in severity from the mild stage, when it is just beginning to affect a person s functioning, to the severe stage, when the person must depend completely on others for care. Caring for Someone with Dementia Drugs are available to treat some of the conditions that cause dementia, even Alzheimer s. Although they do not cure dementia or reverse brain damage, they can improve symptoms. A person with moderate to severe dementia may not be able to think well enough to do normal activities, such as getting dressed or eating. The person may lose the ability to solve problems or control emotions. The personality may change and the person may eventually become nonresponsive (catatonic). Caring for a person with dementia at home can be demanding and stressful for caregivers. Palliative care or hospice can be helpful in many ways to the family of a person with dementia. Delirium Delirium is a confused mental state that causes changes in awareness and behavior and may come and go during the day. A person with delirium may also have problems with attention thinking and memory hallucinations, either hearing or seeing people or things that are not there emotion judgment muscle control sleeping and waking. A person near the end of life may experience delirium. It is common in the last hours of life due to organ failure. Caring for Someone with Delirium People with delirium can make a full recovery if the underlying cause is treatable and reversed. Creating a safe and soothing environment can help improve the course of delirium. You might try keeping the room softly lit at night turning off the television removing other sources of excess noise and stimulation checking for and treating fever (which can cause delirium). The presence of a family member, friend, or a professional may reassure someone with delirium, preventing the need to medicate. Sedatives, sleeping medications, and other minor tranquilizers should be used sparingly unless the person is experiencing drug withdrawals. Is it Dementia or Delirium? Delirium and dementia have similar signs and symptoms, so it can be hard to tell them apart. They can also occur together. Here are some of the differences healthcare providers look for to make an accurate diagnosis. Onset: Delirium starts suddenly; dementia develops slowly. Course: Delirium symptoms fluctuate; dementia symptoms are stable. Duration: Delirium lasts hours to weeks; dementia is measured in months and years. Attention: Delirium causes an inability to focus attention; in dementia, attention is more normal, at least in the early to moderate stages. Providing emotional comfort As with physical symptoms, every client s emotional needs in the final stages of life also differ or vary. However, some emotions are common to many clients during end-of-life care. Many worry about loss of control and loss of dignity as their physical abilities decline. It s also common for clients to fear being a 7

8 burden to their loved ones yet at the same time also fear being abandoned. Late-stage caregivers can offer emotional comfort to their clients in several different ways: Keep the client company. Talk to your client, read to him or her, watch movies together, or simply sit and hold their hand. Refrain from burdening the client with your own problem and feelings of fear, worry and sadness. Instead, talk to someone else about your feelings. Allow the client to express fears of death. It can be difficult to hear a person talk about leaving family and friends behind, but communicating their fears can help them come to terms with what s happening. Try to listen without interrupting or arguing. Allow them to reminisce. Talking about their life and the past is another way some clients gain perspective on their life and the process of dying. Avoid withholding difficult information. If they re still able to comprehend, most clients prefer to be included in discussions about issues that concern them. Honor their wishes. Reassure the client that you will honor and respect their wishes, such as advance directives and living wills, even if you don t agree with them or it s against your belief or values. Respect the client s need for privacy. End-of-life care for many people is often a battle to preserve their dignity and end their life as comfortably as possible. Caring at the end-of-life The end-of-life period when body systems are shutting down and death is imminent typically lasts from a matter of days to a couple of weeks. Some clients die gently and tranquilly, while others seem to fight the inevitable. Reassuring your client and their family of your presence and support can help them through this process. Decisions about hydration, breathing support, and other interventions should be consistent with your client s wishes and advance directives. After the client has passed away, some family members and caregivers draw comfort from taking some time to say their last goodbyes, talk, or pray, before proceeding with final arrangements. Give the family members the time and the privacy they need. Caregiving in the final stages of Alzheimer s disease Final stage caregiving for clients with Alzheimer s disease or other dementia can create unique challenges. In most cases, primary caregivers or family members may have physical, cognitive, and behavioral regression for years. Many struggle to make difficult treatment, placement, and intervention choices through a prism of continuous and profound loss. But as your client s serious decline becomes more evident, the skills and understanding cultured during your caregiving experience can keep you engaged and committed to them. At this stage in the progression of Alzheimer s disease, a client can no longer communicate directly, is totally dependent for all personal care, and is generally confined to bed. Unable to recognize once-cherished people and objects, or to verbally express basic requirements, the person with Alzheimer s completely depends on sensitive caregivers to advocate, connect, and attend to his/her needs. Managing pain Even in the last stages, clients with Alzheimer s disease communicate discomfort and pain. Pain and suffering cannot be totally eliminated, but you can help make them tolerable. Managing pain and discomfort requires daily monitoring and reassessment of subtle nonverbal signals. Slight behavioral changes can signal unmet needs. Communicating written observations, times, and events to your medical team will provide valuable clues about your client s pain status. The soothing properties of touch, 8

9 massage, music, fragrance, and a loving voice can also reduce pain. Be open to trying different approaches and observe your client s reactions. Connecting to people Even when clients cannot speak or smile, their need for companionship remains. The client may no longer recognize people, but may still draw comfort from your touch or the sound of your voice. Staying calm and attentive will create a soothing atmosphere, and communicating through sensory experiences such as touch or singing which can be reassuring to your client. Contacts with pets or trained therapy animals can bring pleasure and ease transitions for even the most frail. Surrounding the client with pictures and mementos, reading aloud from treasured books, playing music, giving long, gentle strokes, reminiscing, and recalling life stories promote dignity and comfort all the way through life s final moments. 9