at the End of Life
One of the biggest, most difficult challenges for caregivers is caring for clients when death is near.
It’s a difficult time for everyone. But it can be especially difficult for caregivers because they have the additional responsibilities of not only caring for the needs of the dying client, but also taking care of the needs of many relatives and friends who want to be with them as death approaches.
This means that frontline caregivers are often an important, central factor in the dying experience for everyone involved.
To make it even more challenging, there are also varying opinions among friends, relatives and the clients themselves about how a dying person should be cared for. Some believe that the client should be given all possible medical help and resuscitation to extend life as long as possible. Others believe that they should be allowed to die a peaceful, natural death with as little mechanical and medical help as possible.
ALZHEIMER’S MAKES IT DIFFICULT
If the client has Alzheimer’s, all this is made even more difficult. This is because someone with Alzheimer’s disease cannot be cognitively involved in any of the decision-making about their death. It can also be very difficult for caregivers to know how to care for them because many times they’re not able to tell them about problems they’re having.
New caregivers can find the experience especially difficult. But you’ll get better at this very important caregiving task with more experience. And you will eventually find that your own personal caregiving can help your clients, their friends and relatives approach the death experience as well as possible. Knowledgeable caregivers are, without a doubt, a huge beneficial asset for the care of those clients who are dying.
Comfort care, sometimes referred to as “palliative care,” is the peaceful, natural approach to dying. Most experts recommend this approach, especially when it is certain that death is inevitable. Comfort care is the special, compassionate care that’s given to a loved one when death is near to allow them to have a peaceful death which comes naturally, without the use of medical techniques that can artificially extend their life. End-of-life care is a very important part of the long-term caregiver’s job. And it’s also one of the most challenging of all caregiver tasks.
The World Health Organization has extensively researched end-of-life care and considers it a major medical problem world-wide, where improvements are badly needed. The agency recommends a peaceful, natural death through palliative/comfort care procedures, and says this: “Palliative care is an approach that improves the quality of life of patients and their families through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual.”
The National Institute on Aging (NIA) recommends similar peaceful death procedures, “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 goal is to prevent or relieve suffering as much as possible while respecting the dying person’s wishes.” So, you can see that throughout the world, caregivers are increasingly being advised to improve their level of end-of-life care experience so that the client dies a peaceful, natural death as free from stress and pain as possible. “Comfort care” is what it’s all about, and caregivers are often right at the very center of providing this.
A National Institutes of Health (NIH) panel that studied end-of-life care said that much more needs to be done to improve caregiving in this area. The panel found that, for many Americans, a lack of continuity of care, and poor communication between healthcare practitioners, clients, and family members make the end-of-life period a “struggle” for everyone.
One of their early recommendations is that better communication among clients, families and caregivers “is crucial to high-quality, end-of-life care.”
It’s often a difficult and emotional time for everyone involved. And since caregivers are many times at the center of it all, they often find themselves not only needing to work compassionately with the client, but also with their family and friends. Having good communication skills at this time can make a huge positive difference in the end-of-life process.
EACH IS DIFFERENT
One thing to keep in mind is that each client approaches the time of death differently with their own unique family, spiritual, psychological and medical needs. One of your jobs as a caregiver is to do all you can to make sure those unique needs are met for them.
To do this properly, you need to learn as much as you can about their individual needs and desires. Find out about your client’s spiritual needs and wishes, whether or not there’s an advance directive that spells out what is to be done relative to resuscitation and life support, and so on.
SOME THINGS YOU CAN DO
Caregivers can be a very important factor in providing compassionate care for their client at this time. Because of the frequency with which they see them, they can actually become one of the most important persons to the client during this stage. So, you need to take this part of your caregiving duties very seriously, and do the best you can. Here are some suggestions that may help:
Keep your client company as much as you can: chat with them, watch movies or TV with them, read books or newspapers, or just be with them. This can also be accomplished by anyone who visits your client during this time.
Allow the client to express fears and concerns about dying, such as leaving family and friends behind.
Be prepared to listen. Being a good listener is always an important part of caregiving, and the end of your client's life is no exception.
Be willing to reminisce about the person’s life with them. Reminiscing about the past is often a favorite activity of the elderly. They love doing it, and it’s important in that it gives meaning and importance to their life-well-lived. Being a good listener and a supporter is very important at this time.
Ask a few questions during your conversation with your client ... including topics you may be interested in ... and you’ll often find it to be an interesting and rewarding time for yourself as well. Sometimes, even if the client is unconscious, researchers believe they can hear what is being said ... so don’t forget to converse with them or encourage visitors to do this, even if they seem unresponsive.
Use a comforting touch. Touch can bring a great deal of comfort to your client as death nears. This includes something as simple as holding their hand, possibly gently rubbing the back of it. Or just a hand on the shoulder as you’re talking to them. You can also encourage visitors to use comfort touch as much as they’d like to. Researchers believe that even those in the later stages of Alzheimer’s respond very favorably to this compassionate touch.
Reassure your client that you will honor advance directives, such as living wills, and any other desires that they may have.
Ask if there is anything you can do.
Respect their need for privacy.
Previous research on end-of-life issues has shown that dying patients face enormous psychological distress. In some instances, this may be even more difficult to bear than physical pain, and may lead to severe depression and suicidal thoughts.
A new caregiving program has been developed within a joint study between the University of Manitoba, Manitoba, Canada, and Edith Cowan University, Perth, Australia, which lessens the emotional suffering of your dying clients, and also enhances the quality of their remaining life. This is something that any caregiver can do, and which can have great benefits for the dying ... plus their friends and relatives, as well. The program is called “dignity therapy,” and consists of giving the terminally ill client the opportunity to record their thoughts and feelings, and discuss issues that are most important to them. The recordings, or written transcripts of the recorded sessions, can then be given to the client for them to share with their loved ones.
One hundred patients took part in the study, whose results were published in the Journal of Clinical Oncology by Dr. Harvey Max Chochinov and colleagues. “The taped sessions, which lasted between 30 and 60 minutes, began with the question, ‘Tell me a little about your life history, particularly the parts that you either remember most or think were most important,’” explained the researchers.
This question helped the caregivers to develop the interview in the most appropriate way, depending on the interest and response. Other examples of appropriate questions, as used in the study, included:
What would you like to be remembered for?
What are your most important achievements?
Is there something in particular that you would like to say to your loved ones?
Are there things you wish for your family?
Have you any particular advice that you would like to offer them for the future?
It is also interesting to note that 81 percent of patients felt that dignity therapy had helped, or would be of help to their families,” point out Chochhinov and colleagues. “This distinguishes dignity therapy as a unique end-of-life care intervention in that it benefits the patients and their family members – with real potential for multi-generational impact.”
Importantly, compared to before the intervention, patients showed a significant reduction in suffering and depression.
An elderly woman dying of cancer who participated in the study said, “This experience has helped me to delve within myself and see more meaning to my life. I really look forward to sharing it with my family. I have no doubt that it will be enlightening to them.”
WATCH FOR SIGNS OF PAIN
The issue of pain at this time is a major consideration that all caregivers need to be alert for. This is because researchers tell us that many are in unnecessary pain and suffering at the end of life. And it’s especially challenging for those with Alzheimer’s, who cannot report their pain and suffering to you.
You don’t want your dying clients to be in pain or suffering, so you need to do the best you can in determining what type of help they may need. The National Cancer Institute (NCI) suggests that if you notice any of the following symptoms, the client may require additional professional care, and that your supervisors should be notified about the situation:
The client is in pain that is not relieved by the prescribed dose of pain medication;
The client shows discomfort, such as grimacing or moaning;
The client is having trouble breathing and seems upset;
The client is unable to urinate or empty the bowels;
The client has fallen;
The client is very depressed or talking about committing suicide.
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. So, be very alert for signs of pain, and if you think pain is not being adequately controlled, tell your supervisor.
Shortness of breath or the feeling that breathing is difficult is a common experience at the end of life. It’s called dyspnea.
The National Institute on Aging has some possible solutions to breathing problems: Try raising the head of the bed, opening a window, using a vaporizer or having a fan circulating air in the room.
Sometimes, medical personnel may suggest extra oxygen, given directly through the nose, to help with this problem. People very near death might have noisy breathing called a death rattle. This is caused by fluids collecting in the throat or by the throat muscles relaxing. It might help to try turning the person to rest on one side. But note that not all noisy breathing is a death rattle. It may also be helpful to know that this noisy breathing is usually not upsetting to the person dying, even if it is to family and friends.
Skin problems can be very uncomfortable for those facing the end of life. The problem is with age, skin becomes drier and more fragile, so it is important for you to help take care of your client’s skin problems, especially as death approaches if they are unable to do so.
Keep an eye out for skin problems, such as dryness of the lips and eyes (which are common near death) and so on. Always keep your client dry and frequently repositioned to prevent the development of pressure ulcers.
WHAT ABOUT EATING?
If your client wants to eat but is too tired or weak, you can help with feeding, says the NIA. If loss of appetite is a problem, encourage eating by gently offering favorite foods in small amounts. Or try serving frequent, smaller meals rather than three big ones.
But, the agency says that you should not force your terminally ill client to eat. Going without food and/or water is generally not painful, and eating can add to discomfort. Losing one’s appetite is a common and normal part of dying. A conscious decision to give up food can be part of a person’s acceptance that death is near.
Those who are dying may not be able to tell you that they are too hot or too cold, so watch for symptoms. For example, someone who is too warm might repeatedly try to remove a blanket. You can take off the blanket and try a cool cloth on his or her head. If a person is hunching his or her shoulders, pulling the covers up, or even shivering — those could be signs of cold. Make sure there is no draft, raise the heat, and add another blanket, but avoid electric blankets because they can get too hot.
It is common for people nearing the end of life to feel tired and have little or no energy, says the NIA. 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. Experts suggest that moving someone to a different place, like a hospital, close to the time of death, should be avoided if possible.
PROVIDING EMOTIONAL SUPPORT
Providing emotional support as death nears is as important as medical support. And this is where caregivers can also become very highly involved, and be of great comfort and support to the client, and all concerned.
It’s important to realize that each person will have different emotional and spiritual needs as death approaches, and you need to find out all you can about these preferences ahead of time. And then, do what you can to comply with them as closely as possible.
RELIGIOUS & CULTURAL NEEDS
One thing you’ll need to find out is if there are any special cultural or religious needs that everyone needs to be especially aware of at this time. Some of these things, in some cultures, may directly impact how you work with your client at the end of life.
You can ask your client about their wishes and preferences, plus family, friends or clergy. Praying, talking with a member of the clergy, reading religious text, or listening to religious music may bring comfort to the client, so do what you can to arrange these visits if your client or their family desires.
FAMILY & FRIENDS
This is also a time when family and friends can be of great help in giving comfort. They can talk about how important they were in their lives.
Grandchildren can let their grandfather know how much he has meant to them. Friends can relate how they value years of support and companionship. Family and friends who can’t be present can send a recording of what they would like to say or a letter to be read out loud by the caregiver or family.
Caregivers are often the ones who helped arrange for these very important visits, and give all participants information and encouragement on how to proceed. It’s an important part of your job at this time.
WHAT ARE THE SIGNS THAT DEATH IS NEAR?
Certain signs and symptoms can help a caregiver anticipate when death is approaching. It is important to remember that not every person experiences each of the signs and symptoms.
In addition, the presence of one or more of these symptoms does not necessarily indicate that your client is close to death. They are guidelines only. Here are some signs, from the NCI, that can indicate that perhaps death is approaching:
Drowsiness, increased sleep, and/or unresponsiveness (caused by changes in metabolism):
What to do: The caregiver and family members can plan visits and activities for times when the client is alert.
It is important to speak directly to them and talk as if the person can hear, even if there is no response. Most are still able to hear after they are no longer able to speak. Clients should not be shaken if they do not respond.
Confusion about time, place and/or identity of loved ones; restlessness; visions of people and places that are not present; pulling at bed linens or clothing (caused in part by changes in metabolism):
What to do: Gently remind the client of the time, date and people who are with them. If they are agitated, do not attempt to restrain them. Be calm and reassuring. Speaking calmly may help to reorient them.
Decreased socialization and withdrawal (caused by decreased oxygen to the brain, decreased bloodflow, and mental preparation for dying):
What to do: Speak to your client directly. Let them know you are there for them. They may be aware and able to hear, but unable to respond. Professionals advise that giving them permission to “let go” can be helpful.
Decreased need for food and fluids, and loss of appetite (caused by the body’s need to conserve energy and its decreasing ability to use food and fluids properly):
What to do: Allow the client to choose if and when to eat or drink. Ice chips, water or juice may be refreshing if they can swallow. Keep your client’s mouth and lips moist with products such as glycerin swabs and lip balm. If they do not want to eat, don’t force them ... a reduction in appetite is a natural part of the dying process.
Loss of bladder or bowel control (caused by the relaxing of muscles in the pelvic area):
What to do: Keep them as clean, dry and comfortable as possible. Place disposable pads on the bed beneath them and remove them when they become soiled.
Darkened urine or decreased amount of urine (caused by slowing of kidney function and/or decreased fluid intake):
What to do: Caregivers can consult with the care manager regarding the need to insert a catheter to avoid blockage.
Skin becomes cool to the touch, particularly the hands and feet; skin may become bluish in color, especially on the underside of the body (caused by decreased circulation to the extremities):
What to do: Blankets can be used to warm your client. Although the skin may be cool, they are usually not aware of feeling cold. Caregivers should avoid warming them with electric blankets or heating pads, which they can cause burns.
Rattling or gurgling sounds while breathing, which may be loud; breathing that is irregular and shallow; decreased number of breaths per minute; breathing that alternates between rapid and slow (caused by congestion from decreased fluid consumption, a buildup of waste products in the body, and/or a decrease in circulation to the organs):
What to do: Breathing may be easier if the person’s body is turned to the side, and pillows are placed beneath the head and behind the back. Although labored breathing can sound very distressing to the caregiver, gurgling and rattling sounds do not cause discomfort to the client. An external source of oxygen may benefit. If the client is able to swallow, ice chips also may help. In addition, a cool mist humidifier may help make breathing more comfortable.
The client turns their head toward a light source (caused by decreasing vision):
What to do: Leave soft, indirect lights on in the room.
Increased difficulty controlling pain (caused by progression of the disease):
What to do: It is important to provide pain medications as the doctor has prescribed. The caregiver should contact their supervisor if the prescribed dose does not seem adequate. With the help of others, caregivers may also explore methods such as massage and relaxation techniques to help with pain.
SIGNS YOUR CLIENT HAS DIED
There is no breathing or pulse.
The eyes do not move or blink, and the pupils are dilated (enlarged). The eyelids may be slightly open.
The jaw is relaxed and the mouth is slightly open.
The body releases the bowel and bladder contents.
The client does not respond to being touched or spoken to.
After the clint has passed away, there is no need to hurry with arrangements. Family members and caregivers may wish to sit with them, talk, or pray. When the family is ready, call other family members, friends, and clergy. Provide or obtain emotional support for family members and friends to cope with their loss.
SPECIAL ISSUES FOR THOSE WITH ALZHEIMER’S
For those with Alzheimer’s, the final stages of dying can be very difficult for family and friends. Dr. Stephen Post, professor in the department of bioethics at Case Western University School of Medicine, says that, “Late-stage AD is characterized by the inability to communicate by speech or recognize family members, the inability to move about without assistance, incontinence, loss of appetite, and loss of the ability to swallow, with death usually resulting from aspiration pneumonia, infection, or coronary arrest.”
Post says that aggressive medical interventions are not recommended for those in the late stages of Alzheimer’s disease. “Many family members are not aware that no longer eating and drinking is part of the dying process, and it is normal,” says Post. “Cessation of food intake results in the release of endorphins, which reduce pain.”
Feeding tubes block the release of endorphins and can result in weeks of “unnecessary suffering,” Post says, with elders “uremic and bloated and unable to clear mucus from their lungs.”
Also, feeding tubes interfere with compassionate caregiving at the end of life. For example, experts advise that, “Alzheimer’s elders love sweets ... even in the later stages ... things like milk shakes and ice cream.” Feeding tubes will prevent caregivers and family from giving their dying loved ones these types of treats ... and the compassion that goes with this kind of thoughtful caregiving at the end of life.