As many of you know, I usually write about the events of my week and this week I feel the need to express my thoughts on end of life care. I find that in many care communities individuals do not have a clear understanding or grasp of how to effectively manage individuals at the end of their life. Even with hospice in place care community and private duty staff members often do not understand and respond to terminal agitation and discomfort in the correct or appropriate manner. It is of course understandable and normal for staff to be sad, grieving, and emotional when a resident approaches the end of their life, however clinical staff cannot let their emotions and / or judgement lead to suffering and mis management. Supporting comfort is the most essential part of care when it comes to end of life and comfort care. These interventions are critical and what soothes and supports individuals during their last days and hours. While the dying process is different for each person, the primary goal of end of life care needs to always be kept in mind - to prevent or relieve suffering as much as possible and to improve quality of life while respecting the dying person's wishes. It is therefore important to clearly understand the individuals expressed wishes and support these. Being a caregiver for for an individual at the end of their life is emotionally, physically, and mentally exhausting. The emotional rollercoaster, up's and down's are difficult and often times people along the way lose perspective or second guess interventions. Staff members should reach out to hospice and care management staff at these times to discuss the plan of care and their role in supporting the individual. Having an opportunity to discuss and express emotions is important for not only for family members, but clinical staff who are also grieving, seeing each day the individuals' changes, and working to manage the day to day aspects of care effectively. This will allow the clinician, caregiver to maintain better focus and effectively support the key areas for those dying - physical comfort, mental and emotional needs, spiritual needs, family support.
Below are some key considerations when caring for an individual on hospice:
Pain: Not everyone dying experiences discomfort. Gauging and effectively managing pain is critical however throughout. Many caregivers are resistant to giving pain medications to individuals, however always keep in mind that pain is easier to prevent than often relieve once out of control. Clinicians and caregivers need to support the individual by staying ahead of the pain, reporting if medications are not effective for the individual to hospice timely, and administer medications per hospice instructions. Comfort is critical and must be supported based on the persons individual needs.
Anxiety: Many clinicians do not understand the signs and importance of managing terminal agitation. Managing the mental and emotional health aspects of those dying are critical. Clinicians should reach out to hospice to ensure that they have a clear understanding of medication regimes and report changes timely in real time for prompt intervention. Each person is different, some individuals have fears of leaving others behind, while others are anxious over perhaps being left alone. If an individual is alert it is normal for them to feel anxious, sad, or even depressed. Emotional discomfort needs to be addressed, monitored, and responded to at all times. For those awake and alert, providing an opportunity to talk or simply being there can be helpful. Talking about special memories may be of comfort and help them to find peace in the end. Having a counselor routinely see the individual is also very helpful and strongly encouraged at these times also. Use all your available resources for their benefit such as clergy, music and pet therapy. Near the end non medication related interventions are also beneficial and important- such as low volume music, soft lighting, touch through hand holding or gentle, simple massage, as it is often of comfort knowing that someone is simply there. If the individual begins to develop confusion, support them through soothing words, gentle touch, reassurance and by allowing them to express themselves and connect at their level and where they are. The simple act of being present can make all the difference and is often enough. Remember to be respectful in terms of all communication as hearing stays intact until the end.
Spiritual Aspects: The spiritual needs of the individual should be supported throughout this process and on their terms. They guide the process. Many people find comfort in their faith at the end, while others may struggle with this aspects. Offering time and support is critical. Giving the individual the opportunity to express their concerns or connect with their faith is important and needs to be done. Having a priest, rabbi, or other individual from their spiritual community come routinely can be of value and comfort. Reading bible verses, watching or listening to mass, or listening to spiritual music can be explored and supported as appropriate based on the individuals expressed needs and background.
Physical Aspects: Addressing multiple areas is important for caregivers. Some common areas are noted below.
Fatigue: It is common for those at the end of life to have progressive weakness and fatigue. Conserving their energy is key! Shower chairs, sponge baths, bedside commodes, short activity as tolerated, and short family and friend visits are best. Do not push or over engage as this can lead to pain and agitation. Sometimes individuals will rally for family members to their own detriment sadly. Keep visits short, on their terms, and simple to avoid this. Think of their needs at all times! Be in the moment; it is the quality not the quantity, and sometimes less is definitely more.
Temperature Changes: Temperature regulation becomes an issue at the end of life. Individuals often cannot express that they are hot or cold so clinicians and caregivers need to monitor and focus on the subtle signs to adjust and effectively meet their needs. Shivering, curling up or hunching shoulders can all be signs that they are cold and a blanket is needed. Wringing hands or pushing hands down, or covers down or overall anxiety can be a sign of being hot. Watch the subtle signs and intervene as this may change hourly.
Breathing: Shortness of breath and breathing changes are common at the end of life. This can be not only anxiety producing for individuals, but for clinicians and loved ones Keeping the individuals head slightly elevated, having a light table top or overhead fan circulating air, opening a window for additional air exchange in reasonable weather, using a humidifier, is encouraged and of benefit to help ease breathing, lessen anxiety, and support comfort. Medications such as morphine or other pain medications can help relieve the sense of breathlessness and are encouraged per hospice orders. Clinicians and caregivers need to again assess and report timely any changes to hospice for medication modification and intervention.
Food and Fluids: GI changes are a part of end stage care. Vomiting, nausea, diarrhea, constipation, and loss of appetite are common issues at the end of life. If an individual at the end of life is weak, support pleasure feeding, food and fluids by spoon feeding as tolerated and as advised by hospice staff. Mouth swabs can be of comfort and soothing However, forcing food, overfeeding, and fluids should never be done as eventually they will be unable to process and this can cause distress. Sometimes individuals are people pleasers for family and this can effect them negatively or cause discomfort. Report changes to hospice and get direction as changes occur. Losing one's appetite at the end is common and going without foods and fluids in the final hours will not cause them discomfort. Generally when individuals begin to refuse food and fluids it indicates that death is approaching and food and fluids at that time can cause discomfort.
Skin: Repositioning and assessing skin is important as a part of end of life care. Skin problems can lead to anxiety and discomfort and need to be prevented. Ensuring skin is kept clean, dry, and well moisturized is important. Facial dryness is common- having mouth swabs, ice chips (when awake only), moisturizing lip balm, trying a Luke warm cloth gently over the eyes, can be soothing. Off loading pressure is also important especially when an individual is in the ed for prolonged periods. Pressure ulcers can result if this is not done consistently. Adhering to a repositioning schedule - Turning the person from side to back and then to the other side every few hours may help prevent skin breakdown. Putting a rolled soft cloth or foam pad under the heels or elbow to raise off the bed and reduce pressure is also advised. These interventions go a long way to support comfort and reduce anxiety.
For more information on end of life and comfort care see our sources below or reach out via our contacts tab. Care Management is an essential part of supporting end of life care.
American Music Therapy Association
National Hospice and Palliative Care Organization
Hospice and Palliative Nurses Association
National Alliance for Caregiving
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