End-of-Life-Care: What Loved Ones Should Know

End-of-life care is the care given to someone during the last months or weeks of life. Although it can be difficult to learn about and discuss end-of-life care, it can also be empowering and reduce the uncertainty and fear that often come along with this process.

This is especially important when approaching the end of your own life. While everyone experiences death uniquely, there are some common experiences worth knowing about. There are also practical considerations to be dealt with, as well as emotional ones for those left behind.

This article discusses end-of-life care, what to expect, and how to plan.

What Is End-of-Life Care?

End-of-life care is the care provided by doctors, nurses, family caregivers, and/or spiritual advisors as a person approaches the end of their life.

End-of-life care concerns the comfort and physical needs of the person, but it also includes management of the person's mental, emotional, and spiritual needs. The person may also want to make sure important tasks are taken care of before and after they've died.

Some of the goals of end-of-life care include:

• Managing pain
• Managing other symptoms such as difficulty breathing, nausea, and agitation
• Making sure the person is clean and dry
• Tending to their mental health needs, such as anxiety, fear, or sadness
• Talking to a spiritual advisor
• Complete important tasks such as making sure their pets have a caregiver
• Saying goodbye to specific people
  

End-of-Life Care vs. Palliative Care

Palliative care is care designed to control pain and improve a person's quality of life. It is different from curative care, which is care given with the goal of curing a person of an illness.

The main difference between palliative care and end-of-life care is that end-of-life care is given in the last months or weeks of a person's life, while palliative care can be given at any time during a person's illness, even if they are also receiving curative care.

End-of-Life Care vs. Hospice Care

Hospice care is care given to people who are terminally ill. Its primary goal is to control pain and other symptoms. End-of-life care is more concerned with the whole person; it includes mental, spiritual, and practical care as well as physical care.

What Are Common Symptoms at the End of Life?

While there is no universal dying experience common to all, many people still exhibit some similarities as death approaches. Below are just a few.

Interactions With Others

Often, an individual might start to withdraw from family members, friends, and other loved ones, or show little or no interest in the social interactions, hobbies, and/or physical activities he or she once enjoyed. Others might still socialize and receive visitors, but uncharacteristically display anger or make it difficult to interact with them or to provide care.

Those who are dying often reflect on their lives and might attempt to resolve a troubled relationship or deal with any regrets. Working through The Five Stages of Dying can help individuals say goodbye to loved ones, find a sense of closure, and achieve a sense of peace as death approaches.

Psychological Changes

Sometimes a dying person might experience changes in sensory perception that result in delusions or hallucinations. The patient might manifest this, for example, by:

• Hearing or seeing things that don't exist, resulting in fears about hidden enemies
• Speaking to people who are not in the room (or who have already died)
• Incapacity to follow a line of thought or a conversation without getting easily distracted, referred to as "inattention"
• Appearing agitated and picking at their clothing or bed sheets
• Making random gestures or movements that seem senseless to onlookers

Awareness

Some dying people might experience a phenomenon known as nearing death awareness—a recognition that something is happening to them, even if he or she cannot express it adequately.

Sometimes dismissed by caregivers as delirium or terminal restlessness, the dying patient might talk or act as if they need to prepare for a journey or share a vision about seeing a deceased loved one or a beautiful place.

When Does End-of-Life Care Begin?

End-of-life care may begin at different times depending on the person and their illness. Most healthcare providers consider a person to be near the end of life when they are not expected to survive longer than one year.

Though healthcare providers do their best to estimate how much time someone might have, it is not usually possible to be precise. A person who seems near death may exceed expectations, while someone who is expected to live for months or longer may experience a sudden decline.

Many factors will affect the dying experience for each individual. Some things that influence the end-of-life process include:

• Presence of disease, illness, or other medical condition
• Type of healthcare he or she is receiving
• Medication(s) and/or life-prolonging treatments
• Palliative care and/or entering a hospice program
• Cause of death itself
• Psychological buildup and coping mechanisms of the particular patient
  

How Long Does End-of-Life Care Last?

There is no set time for how long end-of-life care should last. It begins as soon as the person is believed to need it, and continues until their death. Some people may require end-of-life care for only a few days or even hours, while others might need a few weeks, several months, or even longer.

End-of-Life Planning

While this is a natural process, there are some tasks that may need to be tended to and daily life challenges that present themselves.

Paperwork and Planning

During the end-of-life process, it is not uncommon for people to get their affairs in order, if they haven't already (or for a trusted individual to help). For instance, these steps might involve highly practical matters, such as:

• Creating or finalizing a legal will
• Establishing an advance healthcare directive or Do Not Resuscitate order
• Preplanning a funeral or memorial service
• Choosing a power of attorney

That said, it's not uncommon for some people to avoid these things altogether, despite their usefulness.

Visitors

In terms of spending time with others, some people who are dying want to see friends and acquaintances and others do not. This preference can even change from day to day. If you are acting as a gatekeeper for that individual, always ask permission before allowing visitors so you can respect your loved one's wishes as best you can.

Everyday Life

When someone you love is dying, it is perfectly natural to put your normal life on hold. You might want to spend as much time with them as possible and find it hard to think about anything other than helping them through this time. You may also feel on "high alert" when you're apart, waiting to hear news you dread. All of these things are normal and a natural part of your feelings.

Explain as best as you can to your family, friends, and co-workers what you are going through. Be sure they know that additional stresses, strains, or demands may be difficult for you to handle right now. Also, be honest about when you might need assistance.

Would it help to have your children pick up some of the chores at home? Can a friend provide dinners for your family? People often offer to help but do not know what you need. This is your opportunity to let them know.

When Death Is Near

As death grows imminent, those who are dying often lose their appetite—even for their favorite foods or beverages—and lose weight.

While this might prove alarming to the patient's loved ones, this is a perfectly natural part of the end-of-life journey because the individual's body requires less energy. In fact, the chemistry of the human body can change at this point and actually produce a mild sense of euphoria within the dying person.

In addition to not eating or drinking, the dying individual will generally speak little, if at all, and might fail to respond to questions or conversations from others. They also might sleep a great deal, and physical activity will grow limited if not become absent completely.

Physical Signs

Near the end of the dying process, the individual's body will generally begin to show certain signs. Common symptoms that may occur in the last 48 hours of life include:

• A drop in body temperature by one or more degrees
• A gradual decrease in blood pressure 
• An irregular pulse that might run faster or slower
• An increase in perspiration
• A decrease in blood circulation, which affects skin color and is often most noticeable around the lips and nail beds as they become pale and bluish or grayish
  
• Congestion in the throat and airways, which can cause loud, wet respirations or the so-called death rattle

One of the most common symptoms a person experiences at the end of life is breathing that grows more irregular, often slower, and can include Cheyne-Stokes breathing (rapid breaths followed by periods of no breathing at all).

As the individual's body begins to shut down, their hands and feet might become purplish and blotchy in appearance. This mottled skin tone might also slowly spread upward along the arms and legs. The person's eyes might remain open or half-open, but they will not see their surroundings and will usually become unresponsive.

Once Death Occurs

Eventually, the patient's breathing will cease altogether and the heart will stop beating. Death has occurred. At this point, the human body immediately begins a series of physical processes. These include:

• Dilation of the pupils
• A relaxation of the muscles and eyelids
• A growing paleness to the skin's normal color as blood drains from the smaller veins in the skin

If the body remains undisturbed for long enough (several hours), the blood will pool in the areas of the body nearest the ground, and chemical changes in the body's cells will eventually result in rigor mortis—a temporary stiffening of the muscles.

Next Steps

When a loved one dies, there are numerous tasks that survivors might need or want to handle immediately, as well as various duties they will need to accomplish in the days and weeks that follow the death.

Unfortunately, most people avoid talking about death during their lifetimes and therefore never hold a conversation about their final wishes with a loved one, relative, or friend. Because of this, you might need to make arrangements entirely on your own.

Final Disposition

The first decision you should make (if a directive wasn't left for you) is to choose what you would like to do with your loved one's body—what's called the form of final disposition. You have several options:

• Alkaline hydrolysis
• A casketed below-ground burial in a cemetery or memorial park
• A casketed above-ground burial in a mausoleum (Note: This is not available in all locations.)
• Cremation
• Natural or green burial

If the deceased person chose to donate their body (e.g., for medical research), arrangements for that needed to be made before the death occurred.

Funerals and Memorial Services

The immediate family or the deceased's next of kin usually plans a funeral or memorial service. If your loved one preplanned or prearranged his or hers, then you should contact the chosen provider to discuss the details and finalize the arrangements.

Some families will work with a professional provider, such as a funeral director or celebrant, during a funeral arrangement conference to create a fitting, meaningful service that enables loved ones to honor and remember the deceased while comforting and supporting each other. While arranging the service, you will be asked to provide the information needed to write an obituary, and you might decide to write and deliver a eulogy during the funeral or memorial service as well.

Other families choose to forego any such services for various reasons. In these cases, they might select direct or immediate burial or direct cremation. They might then consider having a private affair to honor the individual.

Grief and Loss

Grief is a powerful, multifaceted, and often uncontrollable response that people experience following a personally painful or traumatic event, such as the death of a loved one. While grief is a perfectly normal and necessary reaction to loss, each person will mourn in their own unique way and time.

Despite the deeply personal nature of grief, most mourners still tend to exhibit some of the following characteristics during the days, weeks, and months following the death of a loved one:

• Tears, crying, or sobbing
• Sleep-pattern disruptions, such as insomnia, too little sleep, or too much sleep
• An overall loss of energy
• Feeling lethargic or apathetic about the day's necessary tasks or life in general
• Appetite changes, such as not feeling hungry or eating too much (particularly junk food)
• Withdrawing from normal social interactions and relationships
• Trouble concentrating or focusing on tasks, whether at work, in personal life, or hobbies
• Questioning spiritual or religious beliefs, job/career choices, or life goals
• Feelings of anger, guilt, loneliness, depression, emptiness, or sadness

The sadness and pain caused by grief can create genuine physical effects on your body, such as digestive problems, pain and discomfort, and weight gain or loss. You might even find it challenging to return to your job or office while you're mourning. Because you might have trouble thinking clearly at this time, there are several life decisions you should delay making for a while, if possible.

Some people prefer to grieve by themselves and do not want or need outside assistance. Others might seek and find comfort in sharing the pain, anger, depression, and other emotions they feel following a loss by joining a bereavement support group or speaking with a therapist.

Note that if your loved one dies under the care of hospice, grief counseling may be available to you at no cost through the hospice agency.

Summary

If you would like to provide support and comfort to a grieving family member or friend, there are many practical ways you can help them as they cope with their loss.

While it generally seems difficult to find the right words to comfort a griever, there are meaningful, uplifting expressions of sympathy you can offer. But perhaps the most valuable gift you can offer to someone mourning a death is your quiet, physical presence and your unwavering, non-judgmental support.