End of life care: the way forward

Death is not a strictly medical event. Ideally, health care for those nearing the end of life harmonizes with social, psychological, and spiritual support
Mohammed Abul Kalam, PhD

Death is ultimately a deeply personal human experience that evokes differentreactions, emotions, and perceptions from individuals, families, andcommunities throughout the life cycle. The perception of death is differentfor children, adults seen to be in the prime of life, and those in the lateryears of life, but it is also highly subjective and deeply personal irrespectiveof when it occurs along the life journey.

Perceptions and views about death are also influenced by a wide arrayof social, cultural, economic, geographic, spiritual, and religious beliefs andexperiences. While most people have given thought to how they would liketo die, many have found it difficult to communicate those views and choicesto family and loved ones, and in many cases, family and loved ones havetheir own perceptions and views about death that can influence discussionsabout dying. Even when individuals and families are aligned, societal norms, expectations, and requirements are not always concordant with thepatient’s wishes and choices. No one really knows whether, in the end, thedeath of a loved one occurred with the dignity that was hoped for, or towhat degree the dying experience was marred by pain, fear, and discomfort,emotional or physical.

For patients and their loved ones, no care decisions are more profound than those made near the end of life. Unfortunately, the experience of dying in Bangladesh is often characterized by fragmented care, inadequate treatment of distressing symptoms, frequent transitions among care settings, and enormous care responsibilities for families. The current health care system of rendering more intensive services than are necessary and desired by patients and the lack of coordination among programs increases risks to patients and creates avoidable burdens on them and their families. Palliative care and helping with comfort, care at the end of lifeis anattempt of the current state of health care for person’s ages who are nearing the end of life.

Death is not a strictly medical event. Ideally, health care for those nearing the end of life harmonizes with social, psychological, and spiritual support. All people with advanced illnesses who may be approaching the end of life are entitled to access to high-quality, compassionate, evidence-based care, consistent with their wishes.

This articleevaluates strategies to integrate care and to create a system that coordinates care and supports and respects the choices of patients and their families. The discussions of this write-up will address the needs of patients and their families and assist policy makers, clinicians and their educational and credentialing bodies, leaders of health care delivery and financing organizations, researchers, public and private funders, religious and community leaders, advocates of better care, journalists, and the public to provide the best care possible for people nearing the end of life.

Aging population with disabilities, chronic conditions, and functional impairments need a range of services and supports to keep living independently. However, there often is not a strong link between medical care provided in the home and the necessary social services and supports for independent living. Home health agencies and others are rising to the challenges of meeting the needs and demands of these populations to stay at home by exploring alternative models of care and payment approaches, the best use of their workforces, and technologies that can enhance independent living. All of these challenges and opportunities lead to the consideration of how home health care fits into the future health care system overall.

Helping with comfort, care at the end of life:Comfort care is an essential part of medical care at the end of life. It is care that helps or soothes a person who is dying. The goals are to prevent or relieve suffering as much as possible and to improve quality of life while respecting the dying person’s wishes. But it is necessary to know how to give comfort, what to say, what to do. How to make dying easier—how to help ensure a peaceful death, with treatment consistent with the dying person’s wishes?

Physical Comfort:There are ways to make a person who is dying more comfortable. Discomfort can come from a variety of problems. For each, there are things we or a healthcare provider can do, depending on the cause. For example, a dying person can be uncomfortable because of: Pain,Breathing problemsSkin irritation, Digestive problems, Temperature sensitivity, and Fatigue

Pain: Watching loved someone die is hard enough, but thinking that person is also in pain makes it worse. Not everyone who is dying experiences pain, but there are things can be done to help someone who does. Experts believe that care for someone who is dying should focus on relieving pain without worrying about possible long-term problems of drug dependence or abuse.

Breathing problems: Shortness of breath or the feeling that breathing is difficult is a common experience at the end of life. The doctor might call this dyspnea. Worrying about the next breath can make it hard for important conversations or connections. Sometimes, morphine or other pain medications can help relieve the sense of breathlessness.People very near death might have noisy breathing, sometimes called a death rattle.

Skin irritation: Skin problems can be very uncomfortable. With age, skin naturally becomes drier and more fragile, so it is important to take extra care with an older person’s skin. Gently applying alcohol-free lotion can relieve dry skin and be soothing.Dryness on parts of the face, such as the lips and eyes, can be a common cause of discomfort near death.

Digestive problems: Nausea, vomiting, constipation, and loss of appetite are common issues at the end of life. The causes and treatments for these symptoms are varied, so talk to a doctor or nurse right away. There are medicines that can control nausea or vomiting or relieve constipation, a common side effect of strong pain medications.If someone near death wants to eat but is too tired or weak.

Temperature sensitivity: People who are dying may not be able to tell that they are too hot or too cold, so watch for clues. For example, someone who is too warm might repeatedly try to remove a blanket.

Fatigue: It is common for people nearing the end of life to feel tired and have little or no energy. Keep activities simple. For example, a bedside commode can be used instead of walking to the bathroom. A shower stool can save a person’s energy, as can switching to sponging off in bed.

Mental and Emotional Needs:Complete end-of-life care also includes 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. Encouraging conversations about feelings might help. If the depression or anxiety is severe, medicine may help.A 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. This feeling can be made worse by the understandable reactions of family, friends, and even the medical team. For example, when family and friends do not know how to help or what to say, sometimes they stop visiting. Or, someone who is already beginning to grieve may withdraw.

Doctors may feel helpless because they can’t cure their patient. Some seem to avoid a dying patient. This can add to a dying person’s sense of isolation. The simple act of physical contact—holding hands, a touch, or a gentle massage—can make a person feel connected to those he or she loves. It can be very soothing.

Spiritual Issues:People nearing the end of life may have spiritual needs as important as their physical concerns. Spiritual needs include finding meaning in one’s life and ending disagreements with others, if possible. The dying person might find peace by resolving unsettled issues with friends or family. Many people find solace in their faith. Others may struggle with their faith or spiritual beliefs. Praying, talking with someone from one’s religious community (such as imam), reading religious texts, or listening to religious music may bring comfort.

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. Everyday tasks can be a source of worry for someone who is dying, and they can overwhelm a caregiver. Taking over small daily chores around the house—such as picking up the mail or newspaper, writing down phone messages, doing a load of laundry, feeding the family pet, taking children to soccer practice, or picking up medicine from the pharmacy—can provide a much-needed break for caregivers.
A person who is dying might be worried about who will take care of things when he or she is gone. Offering reassurancemight provide a measure of peace. Reminding the dying person that his or her personal affairs are in good hands can also bring comfort.Don’t hesitate to suggest a specific task to someone who offers to help. Friends and family are probably anxious to do something for you and/or the person who is dying, but they may be reluctant to repeatedly offer when so busy.

Conclusion:This writ-upoffered a profile of when, where, and how we die. It examined the dimensions of caring at the end of life.When the end of life makes its inevitable appearance, people should be able to expect reliable, humane, and effective caregiving. Yet too many dying people suffer unnecessarily. While an “overtreated” dying is feared, untreated pain or emotional abandonment are equally frightening.Approaching death reflects a wide-ranging effort to understand what we know about care at the end of life, what we have yet to learn, and what we know but do not adequately apply. It seeks to build understanding of what constitutes good care for the dying and offers recommendations to decision makers that address specific barriers to achieving good care.

The writer former Head, Department of Medical Sociology, Institute of Epidemiology, Disease Control & Research (IEDCR)
E-mail: med_sociology_iedcr@yahoo.com


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