Not every journey through the end of life is the same. A person’s passing can be sudden, or they might experience a prolonged period of decline. For some older adults facing the end of their lives, their bodies may weaken while their minds remain sharp. Others might maintain physical strength even as their cognitive function diminishes. It’s natural to have questions about what happens as someone approaches death. You might be seeking guidance on how to provide comfort, what words to offer, or what actions to take.
This article aims to provide insights into offering care and comfort to someone who is dying. Providing end-of-life care is often a team effort. It is crucial to always consult with the individual’s healthcare team to ensure that any suggestions are suitable for their specific situation.
Defining End-of-Life Care
What is end-of-life care? End-of-life care is a comprehensive term encompassing the support and medical attention given to individuals and their families during the period surrounding death. It’s important to understand that this type of care isn’t limited to the final moments before breathing stops and the heart ceases to beat. Many older adults live with chronic illnesses, requiring significant care for days, weeks, or even months prior to their passing.
The experience of end-of-life care can vary greatly depending on an individual’s preferences, needs, and choices. Some individuals may wish to spend their final days at home, while others might prefer to remain in a hospital or care facility until the very end. Many desire to be surrounded by loved ones, yet it’s also common for individuals to pass away when their family members are briefly absent from the room. Whenever possible, there are steps you can take to increase the likelihood of a peaceful passing for your loved one, respect their end-of-life wishes, and treat them with dignity throughout their final days.
Generally, end-of-life care addresses four key areas: physical comfort, mental and emotional needs, spiritual needs, and practical tasks. Crucially, the family of the person who is dying also requires support, both with practical matters and emotional distress.
Providing Physical Comfort in End-of-Life Care
Discomfort during the dying process can stem from various sources. Depending on the root cause, both caregivers and healthcare providers can take measures to enhance the dying person’s comfort. Common sources of physical discomfort include:
- Pain
- Breathing Difficulties
- Skin Irritation and Itching
- Digestive Issues
- Temperature Sensitivity
- Fatigue
Managing Pain
Pain is not an inevitable part of the dying process for everyone. However, for those who do experience pain, the primary focus of care should be on effective pain relief, without undue concern about the potential for long-term issues like drug dependence or misuse.
Severe pain can be incredibly debilitating, leading to frustration and irritability in the dying person. This can create additional challenges for families and loved ones trying to communicate and connect meaningfully.
Caregivers and family members play a vital role in pain management. Recognizing pain can be challenging, so it’s important to be attentive to clues such as difficulty sleeping, increased restlessness, or expressions of distress. It’s essential not to hesitate in administering pain medication as prescribed by the physician.
Preventing pain is more effective than trying to alleviate it once it becomes severe, as intense pain can be difficult to control. If pain is not adequately managed, it’s crucial to inform healthcare professionals promptly so that medication dosages can be adjusted or alternative treatments considered. Palliative care specialists possess expertise in pain management for seriously ill patients and should be consulted if they are not already involved (refer to What Are Palliative Care and Hospice Care?).
Addressing Breathing Problems
Shortness of breath, or the sensation of labored breathing, is a frequent experience at the end of life, often clinically termed dyspnea. To help ease breathing, consider elevating the head of the bed, opening a window to improve air circulation, using a humidifier, or employing a fan to gently circulate air in the room. In some cases, medications like morphine or other pain relievers can also help to reduce the feeling of breathlessness.
Irregular breathing patterns, known as Cheyne-Stokes respiration, may also occur. This pattern is characterized by cycles of deep, rapid breaths alternating with shallow breaths or periods of apnea (cessation of breathing). Noisy breathing, sometimes referred to as a “death rattle,” may also be present in individuals very close to death. While this sound can be distressing for family and friends, it typically does not cause distress to the dying person. Repositioning the person to lie on their side or elevating their head may help. Prescription medications can also be effective in managing noisy breathing.
Alleviating Skin Irritation
Skin problems can be a significant source of discomfort. Maintaining skin hygiene and moisture is crucial. Gently apply alcohol-free lotion to alleviate itching and dryness.
Dryness of the face, particularly the lips and eyes, is common near the end of life. The following tips can provide relief:
- Apply lip balm frequently to keep lips moist. Clean the mouth regularly with a soft, damp cloth.
- Gently apply eye cream or gel around the eyes.
- Consider placing a damp cloth over closed eyes.
- If the mouth feels dry, offer ice chips (if the person is conscious) or moisten the inside of the mouth with a damp cloth, cotton ball, or specialized swab.
Prolonged pressure on sensitive skin from lying or sitting in one position can lead to bedsores (pressure ulcers). Early bedsores manifest as skin discoloration or darkening. Monitor carefully for these spots, especially on heels, hips, lower back, and the back of the head.
Repositioning the person every few hours can help prevent bedsores and stiffness. Use foam pads under heels or elbows to elevate them and reduce pressure. Consult the healthcare team about specialized mattresses or chair cushions that may also be beneficial.
Managing Digestive Issues
Nausea, vomiting, constipation, and loss of appetite are common digestive issues at the end of life. Swallowing difficulties may also arise. The causes and treatments vary, so consulting a doctor or nurse is essential. Medications can effectively manage nausea, vomiting, and constipation, which can be side effects of strong pain medications.
If appetite diminishes, gently offer small portions of favorite foods. Serve smaller, more frequent meals rather than large ones. Assist with feeding if the person desires to eat but is too weak or tired.
However, it’s important not to force a dying person to eat. Loss of appetite is a normal and natural part of the dying process. Forgoing food and water is generally not painful, and attempting to eat or drink can sometimes increase discomfort. The conscious decision to stop eating can be part of accepting approaching death.
Addressing Temperature Sensitivity
As death nears, hands, arms, feet, and legs may become cool to the touch. Some areas of the body may develop a darker or bluish hue. Dying individuals may not be able to communicate temperature discomfort, so observe for clues. For example, someone feeling too warm might repeatedly try to remove blankets. In this case, remove blankets and apply a cool cloth to the forehead.
Conversely, signs of feeling cold include hunching shoulders, pulling covers up, and shivering. Ensure the room is free from drafts, increase the room temperature, and add blankets as needed. Avoid electric blankets due to the risk of overheating.
Reducing Fatigue
Feeling tired and lacking energy is a common experience at the end of life. Simplify activities to conserve energy. A bedside commode can eliminate the need to walk to the bathroom. Providing a stool for shower use or offering sponge baths in bed can also be helpful.
Addressing Mental and Emotional Needs in End-of-Life Care
End-of-life care extends to addressing mental and emotional distress. An alert person nearing death may understandably experience depression or anxiety. Addressing emotional pain and suffering is crucial. Consider consulting a counselor, preferably one experienced in end-of-life issues, to facilitate conversations about feelings. Medication may be helpful if depression or anxiety is severe.
The dying person may also have specific fears and concerns, such as fear of the unknown or worry about loved ones left behind. Fear of being alone at the very end is also common. These feelings can be exacerbated by the reactions of family, friends, and even the medical team. Family and friends may withdraw due to their own grief or uncertainty about how to help. Doctors may feel helpless and avoid dying patients when curative treatments are no longer possible.
Mental confusion and unusual behaviors can also occur, making connection with loved ones more challenging and potentially increasing feelings of isolation.
The following tips can help address mental and emotional needs:
- Provide Physical Touch: Holding hands or offering gentle massage can be comforting.
- Create a Comforting Atmosphere: Some prefer quiet, intimate moments. Use soft lighting in the room.
- Play Soothing Music: Low-volume music can promote relaxation and reduce pain perception.
- Involve the Person: If communication is still possible, ask what they need or want.
- Be Present: Visit and spend time with the person. Talk or read to them, even if they cannot respond. If they can communicate, listen attentively without focusing on your response. Your presence itself is a profound gift.
Addressing Spiritual Needs at the End of Life
Spiritual needs can be as important as physical concerns for individuals nearing the end of life. These needs may include finding meaning in life, resolving conflicts, or making peace with their life circumstances. Resolving unsettled issues with friends or family can bring comfort. Social workers or counselors can offer support.
Faith can be a source of solace for many. Others may grapple with their faith or spiritual beliefs. Prayer, reading religious texts, or listening to religious music can be helpful. Connecting with a religious leader, such as a minister, priest, rabbi, or imam, can also provide support.
Family and friends can express the significance of their relationships to the dying person. Adult children might share the impact their parent has had on their lives. Grandchildren can express their love and appreciation. Friends can convey the value of years of companionship and support. For those unable to be present, video or audio recordings or letters can be shared.
Sharing positive memories can also bring peace and comfort to everyone. Some believe that hearing remains even when consciousness fades. Always speak directly to the dying person, not about them in their presence. Announce yourself upon entering the room. Consider having someone document conversations and expressions during this time, as these words can become a source of comfort for loved ones later.
Moments of lucidity may occur even in individuals who have been confused dying person who has been confused. Cherish these moments, but understand that they are often temporary and not necessarily signs of recovery. Dying individuals may sometimes report seeing or speaking with deceased individuals. Avoid correcting or dismissing these experiences. Allow them to experience their reality. Dreams of deceased loved ones or religious figures are also common and often comforting.
Providing Practical Support
Practical tasks are an important aspect of end-of-life care, both to ease the burden on the dying person and to support the caregiver. A dying person may worry about who will manage things after they are gone. Reassurances such as “I’ll water your plants,” “Jessica will care for the pet,” or “Mom will live with us now” can offer peace of mind. Remind them that their affairs are in capable hands.
Everyday tasks can also be overwhelming for both the dying person and their caregiver. Family and friends can provide respite for caregivers by assisting with chores like mail collection, message taking, laundry, pet care, or pharmacy runs.
Caregivers can also feel overwhelmed by the task of keeping family and friends informed. A family member or friend can help set up voicemail messages, blogs, email lists, private social media pages, or phone trees to streamline communication. Resources for setting up these tools easily and securely are listed at the end of this article.
Providing end-of-life comfort and care can be physically and emotionally demanding. If you are a primary caregiver, ask for help when you need it and accept offers of assistance. Don’t hesitate to suggest specific tasks when people offer to help. Friends and family are often eager to contribute but may not know how.
Ultimately, remember that there may be no “perfect” death. Focus on doing your best to support your loved one. The deep grief of loss can be softened by the knowledge that you provided comfort and care to the best of your ability when you were needed most.
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For more information about comfort care
National Institute of Nursing Research 301-496-0207 info@ninr.nih.gov www.ninr.nih.gov/end-of-life
American Music Therapy Association 301-589-3300 info@musictherapy.org www.musictherapy.org
CaringBridge 651-789-2300 customercare@caringbridge.org www.caringbridge.org
CaringInfo National Hospice and Palliative Care Organization 800-658-8898 caringinfo@nhpco.org www.caringinfo.org
What Matters Now 877-365-5533 info@whatmattersnow.org www.whatmattersnow.org
This content is provided by the NIH National Institute on Aging (NIA). NIA scientists and other experts review this content to ensure it is accurate and up to date.
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