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Symptoms at the End of Life
All the passages below are taken from the book “Final Journeys: a Practical Guide for Bring Care and Comfort at the End of Life” by Maggie Callanan. It was published in 2008.
It is as normal to die as it is to be born. And yet somehow, when a terminal diagnosis is made, there is often a sense of being robbed, of a huge injustice, or of a punishment from God put upon us. But in truth, dying is our last developmental task. No one is spared. When and how we must confront it is the mystery. The fact that we must is not.
In our expectations of the natural order of things, deaths that seem to occur too young, or those that seem senseless or unjust shake us to our core. We subconsciously expect to die peacefully in our sleep at a ripe old age. So, of course, much of death seems unjust and wrong. Understandably, we feel that we must fight it, stop it, and change it.
When we care for the dying, the changes in their bodies— and sometimes in their minds— can make them look different and act strangely toward us. It all seems so tragic and abnormal. Our instinct, of course, is to stop it, fix it, make it normal again. And no matter what their age, saying a last goodbye to someone we love is always rife with pain and heartache. Because it’s normal doesn’t make it easy.
Just as one of the many normal symptoms of pregnancy is a swollen belly, there are also many normal signs of dying. I tell my patients and families, “I know this is breaking your hearts. You don’t have to like these changes. They may not look or be acceptable, but they are normal for the process of dying. So let’s not waste precious time and energy trying to change the unchangeable or fix the unfixable. There are many things we can change and fix, so that’s where our energy and focus should be. We can make this better and easier for all of you.”
Frances had been a beautiful, fashionable woman all her life— the kind of woman who never went out of the house without coordinated shoes and handbag and a fresh coat of lipstick. But when at seventy-eight she was diagnosed with liver failure, she surprised her family by abandoning any sense of vanity or self-consciousness.
“I don’t care what I look like. It’s too time-consuming!” she explained. “I just want to have my family here with me and appreciate every last minute we have together.”
And they were there to do just that: her husband, their three children, their four grown grandchildren, and one great-grandchild all camped out in their three-bedroom condo for several weeks as Frances’s health declined. The family shared stories, looked at photo albums, watched movies together, and read journal entries aloud. Two of the grandchildren played songs on their guitars at a respectful volume in honor of their grandmother, who had always loved music.
One day Frances’s daughter, Lila, was going to massage her mother’s feet as she lay in bed. Pulling up the sheet, she noticed that her mother’s left little toe and the one adjacent to it had turned a bluish black. The hospice nurse went into the kitchen with Lila and explained that Frances’s toes were becoming gangrenous. She no longer had adequate blood circulation to her extremities.
“It’s possible that those toes might eventually fall off, but by that point she won’t feel anything there,” the nurse explained calmly. “As awful as it seems, it won’t hurt her at all.” But Lila was horrified.
When Lila returned to her mother’s room, she tried not to show her distress, but she couldn’t hold back the tears. Frances took her daughter’s hand and said matter-of-factly, “You’re worried about my feet, aren’t you?”
“I’ve been a vain woman all my life, Lila. I was always caught up with how I looked. Believe me when I say it’s almost a relief not to care anymore. Those toes, this body, is not who I am. It’s merely a shell, Lila, nothing more.” Frances went on, “It took me until the end of my life to realize that simple truth, but because of it, I am not afraid or even embarrassed.”
At first Lila couldn’t believe what she was hearing, but because of her mother’s acceptance, she learned to relinquish her own fear and discomfort. She suddenly perceived in her mother a new strength she hadn’t anticipated.
Symptoms at the End of Life
Each terminal illness has symptoms that are unique to that specific condition: the excessive bruising seen in blood diseases, the swollen abdomen (called ascites) and yellow cast to the skin (jaundice) characteristic of liver diseases, and fractures and anemia in some bone diseases, to name a few.
It’s especially important to realize this in the case of cancer, which in fact includes a huge category of illnesses. Every cancer has a unique personality, and its symptoms also differ. Many people are frightened or misled when a friend tells them, “Oh, yes, my uncle died of prostate cancer and he had a terrible time with…” when a person with a malignant brain tumor may have entirely different issues. This is another reason to rely on your medical team for information and always to check with them about anything you hear, no matter how well informed your friends or acquaintances may sound.
There also are universal symptoms that appear as death approaches. Most people dying naturally show these signs and symptoms regardless of their disease and no matter what additional symptoms they have from their specific illness. These symptoms are the signs of the dying process itself, and as such they are normal.
Please note, however, that this is generally not true for people who are being maintained by artificial measures such as a respirator or tube feeding. Their dying may be delayed, but their deaths are often more sudden, less peaceful, less comfortable, and less intimate. They often die in intensive care units, surrounded by lights, noise, machinery, and medical staff. Family members are typically sent out of the room when a crisis happens, so they may not even be present at the time of death.
The universal changes I describe here happen to a body dying naturally, regardless of the illness. They are typically more upsetting to friends and family members than to the person who is actually experiencing them. Knowing what to expect can ease the distress of this transition.
Imagine a weary mountain climber with a full backpack. As the mountain gets steeper, the exhausted, depleted climber discards more and more of the load. This helps the climber go on a little longer, until it is impossible to continue. Just so, the dying body, with its rapidly diminishing energy, instinctively rejects food that will simply take energy to digest. Appetite loss is a normal sign of dying. At this point, I recommend to caregivers that they put the scale away. Weighing the patient can only depress both of you. Why do it?
Red meat is often the first food to be rejected by the dying. The foods that they may show an interest in are typically bland and almost tasteless, such as very small amounts of cream of wheat, even if they hated it when they were well. Puddings or a sip or two of juice are also enjoyed. But most dying people have no appetite at all as death approaches, and if they do accept any nutrition, it is usually to please or placate the worried caregiver.
Difficulty swallowing can occur earlier in throat diseases and when there are brain and neurological compromises from tumors, strokes, or degenerative diseases. But dying people nearly always become too weak to swallow in the last week or so of life. They start to sputter and cough even when taking just liquids, and the difficulty continues until they are unable to swallow at all.
It is critically important that the caregiver and family recognize this change and completely stop feeding or offering fluid to the dying person. As difficult as this is, feeding or giving fluids puts him or her at great risk for choking or aspirating— breathing what is fed into the lungs. This could precipitate a death of more drama and discomfort than is necessary. Keeping the mouth clean and moist with small ice chips or wet mouth swabs is usually enough to allay thirst and keep the dying person comfortable.
A number of factors contribute to weakness: disease progression, organ failure, unavoidable changes in nutrition and hydration, and failure of the brain cells that send the limbs messages to move. The little energy the body has left is being used to fight the losing battle with the disease. There is no remedy for weakness. Exercises that may have been recommended earlier in the disease are now inappropriate. They do not rebuild wasted muscles; they only serve to increase the dying person’s exhaustion. If pushed to exercise, he or she will feel a sense of failure and the caregiver will feel frustrated. As I’ve indicated in Chapter 11, forcing nutrition or hydration to try to build up someone’s strength can instead have dire consequences.
All of the counterproductive interventions I’ve described are focused on what is gone rather than what is still there to work with. As the dying person gets weaker, his or her need for help and support with physical tasks, such as bathing, dressing, and getting around, increases. It’s common for a patient to want to lie down and rest frequently. This will increase until he or she is in bed full time. The dying often want caregivers and friends to sit quietly with them. Healthy people don’t understand that it actually takes energy just to follow a conversation. The patient may be too weak to talk much— or even to listen. This is normal for dying.
As death nears, the heart is getting weak and the kidneys aren’t filtering as they once did, so the body fluids accumulate and become a burden. In what is called “third spacing,” these fluids are dumped into spaces that are far away from the heart and less important to maintaining survival. They move out of arteries and veins and into the surrounding tissues. This causes puffy, swollen feet, ankles, legs, and sometimes hands and face.
I’m sometimes asked why diuretics aren’t used to reduce this kind of swelling. Diuretics are medications that stimulate the kidneys to increase the output of urine, and they are beneficial in some circumstances. But in the dying, the spaces where the extra fluid is deposited are often beyond the reach of diuretics, so by using them we achieve the opposite: we dehydrate the patient, who continues to be swollen.
It is futile and unrealistic to try to fix this problem. Also, giving diuretics means that the very sick and weak person must get up to go to the bathroom much more frequently, and this is exhausting. If they cannot make it in time, constant contact with urine, whether on bedding or clothes, can cause the skin to break down, forming bedsores that may become infected. A catheter may be inserted into the bladder to prevent this. However, it’s important to weigh the benefits and burdens of this decision, because a catheter is embarrassing, invasive, and annoying to the patient. It’s usually better and far simpler to decrease fluid intake and use ice chips or Popsicles to keep the mouth moist. Incontinence briefs may be needed, and frequent skin cleansing and care is essential.
If the skin is stretched and dry because of the swelling, keep it well moisturized with lotions. Moist skin is much more elastic and less likely to crack and break down than dry skin is.
“But won’t he be thirsty? Doesn’t dehydration hurt?” a worried caregiver might ask.
I ask in return, “Have you ever heard someone say, ‘My arm is thirsty’?”
When the caregiver shakes his or her head, I continue, “Thirst is a mouth sensation and can easily be soothed with ice chips without adding more water to the edema, or body swelling.”
This often occurs very gradually and gently. A caregiver might tell me, “This week he’s taking three naps a day. Last week it was two!” Or “He’s resting longer each time, and it’s a little harder to wake him up.” I’ll then suggest that the caregiver mark the calendar each day with the actual number of hours the patient slept. This shows the family that the dying person’s need to sleep is increasing and his wakeful hours are decreasing. This is normal for dying.
Try to remember that the ill person’s body is at war with the illness. This is a war that we can’t see, and one that the patient ultimately can’t win. Fighting this war takes energy and strength the patient no longer has— and in a compassionate attempt to replenish it, the body will require the person to rest more and more.
As hard as it is to watch someone you love lose weight and become gaunt or jaundiced, it is often more upsetting to deal with mental status changes such as confusion or delirium. The mind is the essence of who we are, so to deal with disorientation and dementia in someone we love is to deal with a stranger who has suddenly moved into a body that is still dear and familiar to us.
It is estimated that approximately 70 percent of people dying of illness experience some degree of confusion before they die. Confusion may come and go, or it may be more prolonged. There are many reasons why this happens: the confusion may be disease-related (as in kidney or liver failure, or with brain diseases); the patient may be too weak and overwhelmed to think clearly; or it may be a side effect of the medications being used. As I’ve discussed in Chapter 30, it may also be related to important experiences that the dying person is attempting to tell us about.
In caring for the dying, I think in terms of “good” confusion or delirium versus “bad” confusion or delirium. If the dying person is enjoying or benefiting from the confusion— if, for example, he or she is enjoying happy dreams and memories— but this upsets the family, leave it alone and reassure the family. However, if the confusion is causing the patient turmoil, agitation, or fear, talk to your medical team for possible solutions. Sometimes adding, subtracting, or rearranging medications can help.
But most important, and regardless of other treatments, listen to the words the dying person is saying and write them down, even if you don’t know what they mean at the time. In time you may find hidden meanings that are not immediately apparent. Always reassure the dying person that he or she is in a safe place and surrounded by caring people, and that you are trying hard to understand what the person is trying to tell you. Try not to get frustrated or judgmental, for as hard as it is for the caregiver, the person who is experiencing the confusion or delirium may feel an increasing bewilderment or loss of control. Listening and patience are the operative words here. Be as loving and understanding as you possibly can. And be prepared for the possibility that you’ll learn something new.
Restlessness and Agitation
I have often thought that this behavior may indicate the last psychic battle before a person resigns him- or herself to dying. But it may also be a sign that something isn’t done, that something is bothering the patient. Because the dying person can no longer verbalize what is needed, he or she becomes agitated. This is the time for caregivers, family, and friends to think hard about what might be missing. Words of forgiveness? Permission “to go” from a loved one? Assurance that the family will be okay? Do you need to call an important person and ask him or her to come? Or send away a person whom the dying individual may wish to spare?
It’s very common to see a dying person plucking at the bedcovers as though they were in the way or holding him or her down. I’ve often suggested removing most of the covers (always guarding the patient’s modesty) to see if that helps.
Once again, family teamwork is important at this time. If the agitation is mild and not distressing to the patient, leave it alone. If, however, it escalates and the patient seems in distress or fearful, medications are available to help. Try every other intervention first, because medication can make it even more difficult for a compromised patient to communicate his or her needs.
Changes in Vital Signs
As death approaches, the blood pressure usually decreases. The pulse usually increases, and if it remains consistently above 120 beats a minute, this can indicate that death is only a few days to a week or so away. It is not uncommon for a dying person to have a fever in the final days. This is not caused by an infection and therefore does not need to be treated by— nor would it respond to— antibiotics. It is probably caused by the dehydration and by changes in the hypothalamus, which is the body’s thermostat. Cool cloths on the face, neck, armpits, and groin, together with over-the-counter anti-fever suppositories, are usually all that is needed, but check with your doctor or hospice nurse first.
Decreased Urine Output
This is the natural result of decreased fluid intake and diminishing kidney function. The urine becomes concentrated and strong-smelling, and it may be as dark-colored as tea. It sometimes contains sediment from cells and mucus shed from the walls of the bladder. Nothing need be done about this. The body is simply winding down, and the patient is completely unaware.
Blood pressure must be above 70/ 0 to make the kidneys produce urine. (Normal blood pressure is 120/ 80, give or take a few points in either direction.) If it’s below 70/ 0, there will be minimal urine made, if any. When the kidneys no longer make any urine at all, they shut down and fail. Kidney failure causes toxins to accumulate in the blood, which gently leads to increased sleeping, coma, and typically a peaceful death.
Changes in Level of Consciousness
It is actually rare for someone to be fully conscious and able to communicate until the very last moment of life. The dying will seem to become more and more “fuzzy” in their thinking and seem “spacy” or detached from the people and events around them. This generally happens gradually, and I suspect it is the body’s natural mechanism of self-protection, so that dying is softened rather than being faced with fear.
Medications being given to the patient, typically for pain, can also cause this fuzziness. Some patients prefer this to having any discomfort. But others request smaller doses, choosing to have some discomfort rather than being mentally spacy. This is another reason it’s so important to work with the patient: to find the amount of medication that best suits the dying person’s wishes and needs.
Sleeping gradually increases, but the patient becomes harder and harder to rouse and may drift immediately back to sleep once awakened. This state of semiconsciousness is usually a very comfortable place for the dying to be— as if they were on a big fluffy cloud just gently drifting farther and farther away from us. We can pull them back by stimulating them to wake up, but as time goes by, more and more stimulation accomplishes less and less, until we cannot bring them back to us at all. And is it the compassionate thing to do to keep pulling them back from such a peaceful place?
Patients who drift in and out are in semi-coma; when they can no longer be pulled back, they are in coma. Semi-coma progresses to coma that is generally short-lived— a few hours to a day or so. The important thing to understand about coma is that although patients cannot respond to us, they do hear us and are aware of what is happening around them. We know that hearing is the last sense to die. (If anything, it seems that hearing becomes more acute as people approach dying.) So talk to the dying, even when they are in coma. They need to hear your reassurances and love. It’s also important to remember to say only the things you want the dying to hear, even if you are in the next room.
Some people I talk to about dying tell me, “I wish I could just die in my sleep!” The vast majority of people dying naturally of illness (I would guess close to 95 percent) go into a brief coma— comparable to a profound sleep state— before they die, so the good news is that most of us do die in our sleep.
Changes in Breathing
In the final hours, or sometimes a day or so before death, a new pattern of respiration occurs. Called Cheyne-Stokes respiration, it is caused by messages sent from the breathing centers in the brain as it slowly dies. These changes are painless, and if the person is still conscious, he or she is usually unaware of them. The pattern starts with a loud, deep, sighing breath that sometimes sounds like a snore. This is followed by a breath with less volume and noise, then by a series of more shallow respirations, until no breath is seen or heard. This is followed by a long pause with no breathing at all that can last thirty to sixty seconds or more. Then respiration starts again with a loud, deep sighing breath, and the pattern repeats, over and over. The periods of no respiration gradually grow longer, and the shallow breaths become even fainter and more irregular, until breathing stops entirely. The final breath is usually so shallow, quiet, and soft that it is often missed. If the family is sitting around the bed talking softly or praying, someone may suddenly notice that the patient hasn’t taken a breath for a few minutes. This is a normal, natural death— peaceful, quiet, and easy.
The “Death Rattle”
This disturbing sound causes much anxiety and concern in those around a dying person. Even its name is ominous and frightening. In actuality, however, it is simply the sound caused by a small amount of moisture or mucus in the back of the throat. A healthy person with this mild congestion, similar to a postnasal drip, would simply clear the throat or cough to relieve it. The dying person is too weak to do either. As he breathes in, the fluid or mucus moves down the windpipe. As he breathes out, it moves back up the windpipe. This occurs over and over with each breath. That is what causes the rattling sound— nothing more than a little mucus or fluid.
There are very good medications that can be given via a patch behind the ear or put under the tongue of a conscious or unconscious person to dry up these secretions and stop the rattling. While this sound is rarely a problem for the dying person, the medications make it easier on anyone witnessing the death. The “death rattle” seems to stay negatively in people’s minds forever, so stopping it with medications is good, compassionate symptom control for the observers, while not being harmful to the patient.
As the heartbeat becomes weaker and threadier, the blood is not pushed through the veins and arteries efficiently, so it pools or pockets in the low places on the body: along the back of the person lying in bed, and along other parts of the body that are against the mattress. Some areas become bluish or purplish, while others are very blotchy and blanched out. Mottling usually starts in the feet and moves up the body. It seems that our bodies die from the toes up.
At the same time, the body attempts to counteract the failing circulation by pooling the blood around the vital organs of the body. The hands and arms, as well as the feet and legs, appear bluish in color and feel much cooler or even cold to the touch compared to the trunk, which may still feel warm from the blood that has pooled around the heart and lungs.
Again, these changes are not problematic to the patient, but they can cause alarm in observers. Nothing needs to be done about them, but they are an important sign that death may be hours to a day or so away. This is normal for dying.
THE BOTTOM LINE
Understanding what is normal for dying can help prevent fear and alarm in the onlookers and help them focus on what they can do to help the patient. [241-253]
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