Why should we be talking about it?
One thing most people don’t like to think about is the end of life. However, it should be discussed because it helps create a smooth and humane transition that everyone deserves. So, what exactly is end-of-life care? What are the things you need to have in place? How do you discuss such a sensitive topic?
When you reach the end of life, each story is different. For some, death comes suddenly. Others linger, gradually fading. No matter how it happens, the loss is personally felt by those close to the one who has died. It’s important to realize that a peaceful death might mean something different to you than to someone else. If given a choice, some people want to be surrounded by family and friends; whereas, others want to be alone. However, everyone wants certain things, such as avoiding suffering, having their end-of-life wishes followed, and being treated with respect while dying.
Keeping these in mind is why comfort care is an essential part of medical care. It helps or soothes a person who is dying. The goals are to prevent or relieve suffering as much as possible and improve the quality of life while respecting the dying person’s wishes. End-of-life care addresses four areas—physical comfort, mental and emotional needs, spiritual issues, and practical tasks. The care is also designed to support the families of the individual.
When someone is close to the end of their life, discomfort can come from various problems, such as pain, breathing problems, skin irritation, digestive problems, temperature sensitivity, and fatigue. There are ways to make the person more comfortable.
While not everyone who is dying experiences pain, you can do things to help someone who does. A key thing to realize is that pain is easier to prevent than to relieve. This is why it’s vital to ensure that the level of pain does not get ahead of pain-relieving medicines. If a person’s pain isn’t controlled, be sure to tell the doctor or nurse. Pain can make someone seem angry or short-tempered. Although understandable, this might make it hard to talk and share thoughts and feelings. By alleviating pain, it can help reduce the person’s irritability. Just keep in mind that pain medication can make a person drowsy or confused.
Another common experience at the end of life is shortness of breath or the feeling that breathing is difficult. To help the person, try raising the head of the bed, gently turning their head, turning the person on their side, opening a window, using a cool-mist humidifier, or having a fan circulating air in the room. You can also ask the medical team about medication or the use of oxygen. One thing that is often alarming for family members is that people near death might have noisy breathing, sometimes called a death rattle, caused by fluids collecting in the throat or by the throat muscles relaxing. This noisy breathing is usually not upsetting to the dying person.
Skin naturally becomes drier and more fragile, so skin problems are more likely to occur and can be very uncomfortable. It’s essential to take extra care with an older person’s skin. Gently applying alcohol-free lotion can relieve dry skin and be soothing. A lip balm or petroleum jelly could keep the person’s lips from getting chapped. A damp cloth placed over closed eyes might relieve dryness. If the inside of the mouth seems dry, giving ice chips (if the person is conscious) or gently swabbing the mouth with a damp cloth. Sitting or lying in one position puts constant pressure on sensitive skin, leading to painful bedsores. Keep an eye on specific areas, like the heels, hips, lower back, and back of the head. Every few hours, turning the person from side to back and to the other side may help prevent them. Another option is putting a foam pad under an area like a heel or elbow to raise it off the bed and reduce pressure. Also, incontinence can lead to skin irritation, so the person should be checked and changed regularly.
Other common issues are nausea, vomiting, constipation, and loss of appetite. The causes and treatments are varied. If someone near death wants to eat but is too tired or weak, you can help with feeding. Try gently offering favorite foods in small amounts and frequent, smaller meals. Don’t force a person to eat. Although food and drink should always be offered by mouth to the person, artificial feeding and hydration, such as through intravenous lines or a feeding tube, may cause discomfort to someone whose body is no longer processing food and liquids normally.
People who are dying may not be able to convey whether they’re too hot or too cold, so watch for clues. Is the person shivering? Do they keep trying to remove a blanket? Adjust the room temperature and bedding as needed. Avoid electric blankets because they can get too hot. People nearing the end of life are also more likely to feel tired and have little or no energy. Try to keep activities simple, so they don’t get worn out
While it’s difficult to know precisely when someone will die, there are common signs that may indicate the last days or hours of life. These may include restlessness, confusion, agitation, increased sleep/periods of drowsiness, loss of appetite, irregular breathing, pauses in breathing, swelling/coldness/blue coloring in the hands or feet, reports of seeing someone who has already died, and gurgling/crackling sounds with breathing.
Mental and Emotional Needs
Understandably, someone who is alert near the end of life might feel depressed or anxious. Encourage them to talk about their feelings. If the depression or anxiety is severe, medicine may help. Often, the person has some specific fears and concerns, such as fearing the unknown or worrying about those left behind. Speak calmly and be reassuring. Hold hands or use a gentle touch can be comforting. Family and friends can talk to the dying person about the importance of their relationship and sharing memories of good times. In fact, this can be comforting for everyone. It might be possible for an unconscious person to hear still. So, it’s never too late to say how you feel or to talk about fond memories.
If the person is confused, remind them where they are and who is there. There may come a time when a dying person who has been confused suddenly seems clear-thinking. Take advantage of these moments, but understand that they might be only temporary. Sometimes, a dying person may appear to see or talk to someone who is not there. Don’t interrupt them or say they’re imagining things.
Try to set a relaxing mood. Music at a low volume and soft lighting are soothing. It may not be necessary to fill the time with talking or activity—just being present with a dying person is often enough. Ask the medical team for help if significant agitation occurs.
Spiritual needs include finding meaning in one’s life and ending disagreements with others. Many people find solace in their faith. Others may struggle with their faith or spiritual beliefs. If the person wants, praying, talking with someone from one’s religious community, reading religious texts, or listening to religious music may be comforting.
Many practical jobs need to be done at the end of life of someone’s life. These can relieve the person who is dying and support the caregiver. Sometimes, a dying person is worried about who will take care of things when they’re gone. Offer reassurance and remind them that their personal affairs are in good hands. By taking over small daily chores around the house, you can provide a much-needed break for caregivers. If you want to help but can’t get away from your own home, schedule other friends or family to help with small jobs or bring in meals. If you’re the primary caregiver, ask for help when you need it and accept help when it’s offered. When asked, don’t hesitate to suggest a specific task the person can do. It can be overwhelming to keep close friends and family informed. So, set up an outgoing voicemail message, a blog, an email list, a private Facebook page, or even a phone tree can help.
Advance Directives and Other Legalities
Many Americans die in facilities such as hospitals or nursing homes receiving care that is not consistent with their wishes. It’s important for all adults, especially older adults, to plan ahead and let their caregivers, doctors, or family members know their end-of-life preferences in advance.
It’s vital to understand some key concepts when it comes to legal rights. Technically, any person capable of making medical decisions for themselves may refuse life-sustaining and even life-saving treatments. The person can do this even if their life will be shortened, and they’re not terminally ill. If the person can no longer make health care decisions for themselves, a caregiver or family member may have to make those decisions. There are several factors to consider when doing so, including the person’s desire to pursue life-extending treatments, how long they have left to live, and the preferred care setting.
There are specific legal documents that allow you to spell out your healthcare decisions ahead of time. This makes it clear what care you want and what treatments you do not want. This is known as an advance directive. They only go into effect only when you lose the ability to make decisions. It’s important to note that only healthcare professionals can determine if you do or don’t have the ability to make decisions.
There are two common types of advance directives living wills and durable power of attorney for healthcare. Living wills laws allow you to direct healthcare providers to withhold or withdraw treatment that keeps you alive if you become terminally ill and are no longer able to make decisions. The durable power of attorney for healthcare is more flexible and comprehensive than a living will. You to choose a surrogate decision-maker (such as a friend or relative) to make your medical decisions if you lose the ability to make them yourself. Besides discussing with the selected person if they’re comfortable with fulfilling the role, you should discuss the types of treatment(s) you would or would not want in specific situations so that they have some guidelines if the need arises. The surrogate’s job is to make the decisions you would make for yourself if you could still do so. You get to decide the amount of responsibility that you want the surrogate to have. You should also let your surrogate know if you change your mind about something.
In addition to talking to your surrogate, you need to file legal paperwork that indicates your choices and names who your surrogate is. They should be specific, clear, and available whenever you need them. Also, they should be reevaluated and revised whenever your medical condition changes. It’s also a good idea to discuss your wishes with relatives, other people close to you, and your healthcare providers while you are still able. It’s never too early to have these conversations. This will help prevent conflict and avoidable stress. It’s important to remember that your expressed wishes are legally and ethically more important than what others want for you, even if they feel that they are acting in your best interests. Following an advance directive demonstrates respect for you as an individual. For healthcare professionals, it’s a legal and ethical obligation.
The good news is most states now have initiatives to improve end-of-life care by using forms that put a person’s goals and preferences into medical orders that a clinician must follow. These forms are different from advance directives and are most appropriate for individuals who are seriously ill. These forms have various names, such as Physician Orders for Life-Sustaining Treatment (POLST), Medical Orders for Life-Sustaining Treatment (MOLST), Physician Orders for Scope of Treatment (POST), and Medical Orders for Scope of Treatment (MOST). You can find the form appropriate for your state by accessing the National POLST website.
It’s vital to understand that advance directives have limitations. Maybe, the person doesn’t fully understand treatment options or recognize the consequences of certain choices in the future. Sometimes, a person changes their mind after expressing advance directives and forgets to inform others. Often, advance directives are too vague to guide clinical decisions. However, precise directions for future care may not be helpful when situations change in unexpected ways, like new medical therapies became available since an advance directive was written. Another consideration is that advances in medical treatments and technologies can often create medical dilemmas. For instance, certain therapies are life-saving and can bring a person back to their previous level of function and independence. Yet, these treatments can also be harsh, especially for people already in poor health, resulting in inconvenience, pain, and suffering. Often, these treatments may prolong life but will not cure or improve conditions or quality of life.
Despite their limitations, having an advance directive is better than not having one. This is why when a person is diagnosed with a serious illness, they should prioritize early advance care planning conversations with their family and doctors. Several studies have shown that people who do this are more likely to be satisfied with their care and have care aligned with their wishes. You don’t have to start from scratch. The National Institute on Aging funds PREPARE for Your Care, an interactive online program that helps a person fill out an advance directive and express their wishes in writing. This tool is available in English and Spanish.
There are a couple of other distinctions to be aware of. Your clinician can write a “Do-Not-Resuscitate” (or “DNR”) order to help make sure you don’t receive unwanted CPR (cardiopulmonary resuscitation). While CPR may be an effective and appropriate treatment for unexpected sudden death, it’s not either of these for people who are near the end of life. However, even if someone has a DNR, they can still choose to have or go without other life-sustaining treatments, including hospital or intensive care. It’s important to realize that treatments that have been started can always be stopped. It’s appropriate to stop or withdraw life-sustaining treatments if they aren’t beneficial or consistent with an individual’s wishes and priorities. Just because life-sustaining treatments have been refused or stopped, the individual can still receive medical care to treat symptoms, like pain or shortness of breath.
Palliative Care vs. Hospice Care
Palliative care is specialized medical care for people living with serious illnesses, such as cancer or heart failure. It’s meant to enhance a person’s current care by focusing on the quality of life for them and their family. Patients in palliative care still receive medical care for their condition. While palliative care can be helpful at any stage of illness, it’s best provided soon after a person is diagnosed. In fact, it can help patients understand their choices for medical treatment.
Palliative care is provided by a team of multiple professionals that work with the patient, family, and the patient’s other doctors to provide medical, social, emotional, and practical support. The team is comprised of palliative care specialist doctors, nurses, social workers, nutritionists, and chaplains. Each team varies depending on a person’s needs and level of care. Palliative care can be provided in hospitals, nursing homes, outpatient palliative care clinics, other specialized clinics, or at home. Medicare, Medicaid, and insurance policies may cover palliative care. Veterans may be eligible for palliative care through the Department of Veterans Affairs.
Palliative care could transition to hospice care if the doctor believes the person is likely to die within six months. Hospice care is focused on comfort, not on recovery. The six-month time frame comes from Medicare. A person can receive hospice care if their health care provider thinks they have less than six months to live should the disease take its usual course. However, it can be hard to predict how long a person will live because health often declines slowly. What happens if someone under hospice care lives longer than six months? If the doctor continues to certify that that person is still close to dying, Medicare will continue to pay for hospice services. It’s also possible to leave hospice care for a while and later return if the healthcare provider still believes that the patient has less than six months to live.
Hospice provides comprehensive comfort care as well as support for the family. At some point, it’s not possible to cure a serious illness, or a patient may choose not to undergo certain treatments. Hospice is designed for this situation. The patient must understand that their condition is not responding to medical attempts to cure it or slow the disease’s progress. It’s vital to remember that stopping treatment aimed at curing an illness does not mean discontinuing all treatment. Many patients can have months of meaningful care and quality time with loved ones by starting hospice early. More and more, people are choosing hospice care at the end of life for this reason.
Similar to palliative care, hospice care isn’t tied to a specific place. It can be offered at home or in a facility, like a nursing home, hospital, or separate hospice center. Also, like palliative care, nurses, doctors, social workers, spiritual advisors, and trained volunteers work together with the dying person, the caregiver, and the family to provide the medical, emotional, and spiritual support needed. A hospice team member visits regularly, and someone is usually always available by phone, 24 hours a day, seven days a week. It’s important to note that although hospice provides a lot of support, if the person is at home, the day-to-day care is provided by family and friends. The hospice team will teach family members how to care for the dying person and even provide respite care when caregivers need a break. Respite care can be for as short as a few hours or for as long as several weeks. Families of people who received care through a hospice program are usually more satisfied with end-of-life care than those who didn’t have hospice services. Also, hospice recipients are more likely to have their pain controlled and less likely to undergo tests or be given medicines they don’t need.
Does it matter where care is received?
The ability for individuals to benefit from home-based care is largely dependent upon whether they have the needed resources to receive care in this setting. This is linked with the person’s care goals, condition, and the amount and quality of caregiving support available. There are many benefits of receiving end-of-life care at home, such as the ability to remain in a familiar and comfortable setting. However, the costs for home-based care are highly dependent upon the type, intensity, and frequency of care that is needed. Care may be provided by hospice, community-based palliative care programs, home health agencies, professional caregivers, and family members. If not covered by other sources, patients and families must cover the costs of care.
Long-term care facilities, like assisted living and skilled nursing facilities, are appropriate for individuals who require higher levels of support than can be provided in the home setting because they can meet a wide range of care needs. One of the downfalls of long-term care facilities is cost. These vary depending upon the region and individual needs.
Hospital-based care is appropriate for individuals who require a more intense level of care, which may include specialty and general inpatient units, as well as the intensive care unit. The primary benefit is having medical personnel immediately available 24/7. The main problem is costs can soar quickly. Unfortunately, patients and families have very little control over this and aren’t aware of, until their portion is due. Wherever the person is, experts suggest that moving someone to a different place close to the time of death should be avoided if possible since it can be confusing and cause the person unneeded stress.
Advance care planning allows people to improve satisfaction with their quality of care and die in their preferred place. It also reduces stress, depression, and anxiety in the surviving relatives. So, it’s important to start thinking about your preferences for the end of your life and discussing them with your family and healthcare provider. Also, don’t forget to make clear your thoughts about palliative and hospice care. Remember, hospice care always includes palliative care, but individuals who are likely to live longer than six months can benefit significantly from stand-alone palliative care. All of these decisions are highly individualized and essential to guiding surrogates and clinicians in providing treatments that are consistent with your wishes, which is something that everyone deserves at the end of life!