The Last Days: Imminent Death
The process of dying | process and care during the last days | loss of appetite | decreased fluid intake | dreams | coma and changes in consciousness | symptoms before and after changes in consciousness | coma care | after death occurs (2/2005)
Humans have written, painted, and sung about dying; we have created immense religious and psychological edifices to our deep concerns about dying and death. And still, after all these years, few of us have a clear idea of how we die. This chapter is about the last few days of life. I cannot explain what it is like to die. But I can provide valuable information about what causes humans to die and what happens in the last few days of life. First, let me say that for the great majority of people with terminal illness, death comes relatively easily and is not the catastrophic event imagined by some. The hardest part of dying usually is the fear, not the reality of it.
Common causes of death in patients with cancer include, in decreasing order, infection (47%), primarily pneumonia or septicemia; organ failure (25%), primarily lungs, heart, liver, central nervous system, or kidneys; infarction or area of tissue damage from decreased circulation (11%), in the lungs or heart; carcinomatosis or widespread metastatic disease (10%); and hemorrhage (7%), primarily within the body, e.g., gastrointestinal tract or brain. In all cases, the final cause of death is a lack of oxygen to the brain.
Many families worry about how they will know when the person is actually dying as opposed to being sick. It is difficult to get an answer to the question of when because everyone in this work has seen people live for a longer or a shorter time than expected. For patients with cancer, factors that, when occurring together indicate survival of less than four weeks are:
Far advanced illness and a major intractable infection such as pneumonia or septicemia are likely to result in death in less than a week.
In patients with AIDS, the likelihood of death increases with significantly decreased CD4 cell count, diagnosis of wasting syndrome, Mycobacterium avium-intracellulare complex infection (MAI), or lymphoma. Any other intractable opportunistic infection may also lead to death.
In general, as death nears, there is seldom a sudden dramatic increase in pain, although pain and other symptoms may increase, or in some cases, decrease as the disease advances. Some people become confused or agitated in the last days or weeks of life (see neurological problems). Regardless of mental status, at least some degree of social withdrawal is common, but does not necessarily indicate a problem. The person who is dying is facing eternity, and social interaction, or at least conversation, may be less important than before. However, the presence of loved ones remains very important. Drowsiness or coma is common in the last few days.
| Family involvement remains important, both for the patient and family. Giving care in the final days means that people are busy giving love rather than sitting, worrying and helpless. This is the last chance to say good-bye and whatever else needs saying, especially messages of love and acceptance. Prayer and sacred readings are appropriate for many. This is also a time to stay quietly with the person who is dying. What is done and said at this time will long be remembered by those who remain. |
Process and Care During the Last Days
While each person goes through the process of dying differently, there are events or phenomena common to many people. Although this (larger) section is divided into major symptoms/systems and then coma care, readers should understand that reality does not follow such clear-cut demarcation.
Most people become anorexic or lose their appetite in the last weeks, or in some cases, months of life. This may be due to a loss of desire for food, changes in taste, or difficulty swallowing. The loss of desire for food may be viewed as adaptation to the body's decreased ability to digest or even eat food. It is common for family members to have a strong desire to give food even to patients too weak to eat. Giving food is way to nurture or show love and not giving food is seen by some as giving up on the person. Often, they feel the patient needs to, "Keep up his strength." Regardless of the motivations in giving food, having food forced is a burden for the patient. If the patient is unable to swallow adequately, forcing food may result in choking. Rather than force or push food on a person who does not want it, offer small amounts of fluids from a favorite glass. If the person is completely unable to swallow, moisten his or her lips. In all cases, stay with the person. See chapter on gastrointestinal problems.
Many people refuse to drink in their final days or hours. As with food, this may be a way of adapting to the body's diminished ability to function. Indeed, in recent years, we have learned that dehydration in the last days of life is often less of a problem than is over-hydration. In people who are imminently terminal, forcing fluids or starting intravenous infusions for hydration (as opposed to intravenous fluids as a means of administering medications) can increase fluid in and around the lungs (pulmonary edema), fluid elsewhere in the body (peripheral edema), fluid in the abdominal cavity (ascites), urine output, and vomiting. Dry mouth and thirst are the greatest problems from decreased fluids in the last days of life. Decreased fluid intake also leads to electrolyte changes, including hypercalcemia. When a person refuses fluids, it is necessary to give frequent oral care (at least every two hours and more often if the person is breathing through his or her mouth). Care consists of keeping the inside of the mouth moist by giving occasional very small sips of fluid (one-two drops); or giving the person at least hourly fine sprays from an atomizer (not a squirt bottle). Lips may be kept moist with lightly applied creams. The mouth should be cleaned at least every eight hours. Oral care is discussed in greater detail in the section on oral problems.
Anxiety and Depression
The approach of death is highly distressing to some patients, resulting in increased anxiety or depression.
There are also numerous medical or pharmacologic complications that can increase anxiety, including (but not limited to) primary or metastatic CNS tumor, dyspnea, hypoxia, sepsis, unrelieved pain, and withdrawal of opioids or anxiolytic medications. In imminently terminal patients, the nonpharmacologic measures such as meditation, biofeedback, etc. are of little or no use. Medications for anxiety in terminal stages include:
Depression is treated as discussed in the section on individual care. New onset depression or anguish may have to be treated with sedation as the goal (because of the delay in therapeutic effects in antidepressant medications). Spiritual measures should also be instituted in many cases.
Respiratory Changes
Changes in respiratory status are common in imminently terminal patients. Breathing usually becomes increasingly shallow and/or labored as death nears. There may be brief periods in which the person stops breathing, then starts again. Respirations may slow. Some people, especially those who are well-hydrated, have increased fluid in their lungs and difficulty managing the fluids, i.e., they may have difficulty coughing or swallowing effectively.
Dyspnea is managed (as described in the section on respiratory problems) with:
Note, however, that oxygen is not a magic answer to difficulty breathing since using it tends to increase the need for it. Suctioning, a standard procedure in critical care units, seldom increases the quality or length of life for people who are close to death. The procedure is often traumatic to the person and relief from secretions tends to be only temporary. The person's room should be cool and well-ventilated, and a slight cool breeze from a fan to the person's face helps. The person can be positioned on his or her side so that lung secretions do not pool; or in other cases, elevating the head may help. Please see the section on respiratory and cardiovascular problems.
In the last weeks of life many patients begin to have vivid dreams about loved ones who have died previously. These dreams tend to be comforting or evoke nostalgia. Some people also dream of dying or having died. In most cases these dreams are either comforting or are more or less neutral in effect. There is a kind of matter-of-fact response to these dreams of dying or death; and they ultimately are comforting. Many people will not report or tell about their dreams unless specifically asked. It is thus a good idea to ask about dreams; and ask the person to tell about them in as much detail as possible. Other people involved also have important dreams.
About a month before my mother died I dreamed that I was at my Grandmother's home (she had died 35 years before) in Cleburne, Texas. At first I was in the front yard, and then I felt compelled to walk down her old gravel driveway. When I got to the back of the house I looked into the back yard where her garden was and there was the most beautiful gold light filling the yard and then all that I could see. I burst into tears. I was still crying when I awakened, but I felt better than I had for quite awhile.
Coma and Changes in Consciousness
Most people become drowsy or comatose; and some become confused or agitated. If possible, confusion or agitation is treated according to the cause, i.e., if the cause is increased pain, the pain is treated with opioids as appropriate; or if due to difficulty breathing, treated with oxygen and/or opioids as described in the sections on pain and respiratory problems (ands also see above). Recall from the chapter on pain that poorly managed pain can cause confusion, especially in older patients. When the cause is not known, confusion or agitation can be treated with low doses of neuroleptics or major tranquilizers (especially haloperidol) or in some cases, anti-anxiety medications (see above and section on neurological problems). Coma care is discussed below.
Palliative (or terminal) sedation may be used when symptoms are refractory to treatment, especially pain or unrelieved anguish when the patient is imminently terminal. Palliative sedation used before the last days is also ethically acceptable to some, but not all experts in the field. The problem with palliative sedation in earlier stages is that the patient is sedated to the extent of being unable to eat or drink and death may thus occur from dehydration or malnutrition as a result of medications. The concept of double-effect treatment is considered by many to apply in such circumstances. Palliative sedation is achieved with morphine alone or, often, a combination of morphine and benzodiazepine (lorazepam or midazolam) or barbiturate (thiopental, pentobarbital, phenobarbital) or neuroleptic (haloperidol) or an anesthetic agent such as propofol.
Symptoms Before and After Changes in Consciousness
Unless there is a strong reason to change treatments or medications, symptoms such as pain, nausea, anxiety, etc. are treated as they were prior to the patient's change in consciousness. Because it is often more difficult to give medications orally, the rectal and subcutaneous routes may be used. There is no absolute rule on pain status in the final days of life: Some patients need the same amount of medications, some less, and some more.
People who are comatose receive basic, non-intrusive care as follows:
| Finally, dying comes to this duty: Watch with me. This is what we do when there is nothing else to do, and it is a great gift. |
Death usually comes simply as cessation of life. The person stops breathing and the heartbeat ceases. The struggle is over.
Whether death occurs in the home or hospital, there often is a tendency to hurry through following events. In the home, an ambulance service may be called only a few minutes after the death to transport the body to the hospital for pronouncement; or in the hospital, nurses are often ready shortly after the death to "wrap" or "prepare" the body for transport.
Don't rush. There is no reason to rush the body out. In fact, there usually is good reason to not rush through the after-death events. Slowing what happens after death gives family members time to catch their breath and begin to understand what has happened. This is a time to "say good-by" more than once. Some families want to wash the deceased person's face or otherwise care for the body. In all cases, the body should be straightened. Some want only to sit with the body; and some want to sit with the body for awhile, leave for awhile, then return. In any case, it is seldom, if ever, a mistake to slow the after-death events.
After she died, my brother and I straightened her body. Then I went across the yard to my house and awakened my wife. She knew why I was there and we went back to my Mom's house together. We called my other brother and my mother's sister. After about an hour we called the medical examiner and explained what had happened. About ten minutes later the police, emergency medical service, and a firetruck arrived. The police were respectful and we appreciated their presence. The paramedics and firemen, on the other hand, were intrusive, bureaucratic, and unhelpful.
After they left, we called the medical school to transport her body (she had donated her body). Then we realized our son was still asleep and did not know what had happened. When the hearse came we told the driver we had changed our minds and didn't need the service just yet. It was about four in the morning by then. We went back to our house and awakened David and held him and told him his Grandmother had died. He cried - I'll never forget how desolate he sounded.
Then we all went back to my mother's house. David patted her some, but mostly he sat in my lap in the chair by the bed. We didn't talk much. Through the morning people came in and out of the room. Finally around 10 am we called the medical school to come and transport her. Before she left, David pinned a photograph of himself to her gown. I've always thought that it would be good if the picture was still there when her body got to the medical student who would use her to learn anatomy. He or she would know that this was a woman who had a grandson who loved her.
Different cities and counties, etc. have varying procedures for an expected death in the home. It is essential to find out what will happen after the authorities are notified that a person died at home. The one constant in all cities, etc. is that at some point authorities will be notified, if not by the family, then by the hospice nurse, physician, or whoever is involved in an official capacity. In some places, the hospice nurse or physician can come to the home and pronounce death, call the medical examiner or county coroner, and the body is then taken via private ambulance service to the funeral home. In other places, the body must be taken to an emergency room for pronouncement. In some locales, a DNR or do not resuscitate document may be taped to the patient's room door and a DNR bracelet worn by the patient. In these circumstances (when the document or bracelet is recognized by the local government), resuscitation will not be attempted.
If emergency services are notified, no matter what the caller says, the ambulance and police will come on an emergency basis, and in most cases, the family hurried out of the room and resuscitation attempted - even if the person died an expected death and had an advance directive or "living will." A family member who tries to stop resuscitation attempts, no matter how inappropriate the attempts, can be arrested. If the person is resuscitated (and some are, however briefly), he or she will be taken to the hospital and most likely to critical care and kept alive for a day or two on a ventilator, etc. If the person is not resuscitated, most emergency services will not transport the body for pronouncement or to the funeral home. In some counties where hospices are active, medical examiners provide patients with "Do Not Resuscitate" bracelets or papers prior to death.
Many emergency services will not attempt resuscitation if more than hour has elapsed since the person died (it is a simple matter to make a rough estimate of how long a person has been dead). Thus when death is expected from advanced incurable disease and the patient does not want resuscitation, waiting to call the authorities may prevent resuscitation attempts. To avoid legal difficulties in such cases, there should be an advance directive signed by the deceased person. After death is pronounced, call the funeral home to transport the body. But again, recall that there is no reason to rush through this process.
When death occurs at home, the family often wonders what, if anything, else they could have done. Probably there always is something more that could have been done. That is the way we are as humans. BUT, regardless of whatever might have been less than perfect, there is the sure knowledge that we participated as fully as we were able in something really big and really important. And that is a blessing for the person who died and for those who gave the care. Life is about a lot of things; and one of the most important is taking care of each other.
References
Brescia, F. J. (1997). Specialized care of the terminally ill. In V. T. DeVita, S. Hellman, & S. A. Rosenberg (Eds.) Cancer: Principles & Practice of Oncology (5th ed.) (pp. 2905-2912). Philadelphia: J.B. Lippincott.
Bruera, E., Miller, M.J., Kuehn, N., MacEachern, T., & Hanson, J. (1992). Estimate of survival of patients admitted to a palliative care unit: A prospective study. Journal of Pain and Symptom Management, 7(2), 82-86.
Chaisson, R. E., Gallant, J. E., Keruly, J. C., & Moore, R. D. (1998). Impact of opportunistic disease on survival in patients with HIV infection. AIDS 1998, 12(1), 29-33.
Enck, R.E. (1999). Pain control at the end. American Journal of Hospice and Palliative Care.16(4), 564-565..
Hospice and Palliative Nurses Association. (1997). Terminal Restlessness. Pittsburgh: Author.
Inagaki, J., Rodriguez, V., & Bodey, G.P. (1974). Causes of death in cancer patients. Cancer, 33(2), 568-573.
Kemp, C. E. (1997). Palliative care for respiratory problems in terminal illness. American Journal of Hospice and Palliative Care. 14(1), 26-30.
Kemp. C.E. (1999). Terminal Illness: A Guide to Nursing Care. Philadelphia: Lippincott, Williams & Wilkinns.
Nuland, S.B. (1994). How We Die. New York: Alfred A. Knopf.
Rousseau, P. (2002). Management of symptoms in the actively dying patient. In A.M. Berger, R.K. Portenoy, & D.E. Weissman (Eds.), Principles & practice of palliative care & supportive oncology (2nd. ed., pp. 789-798). Philadelphia: Lippincott Williams & Wilkins.
Twycross, R. & Lichter, I. (1998).The terminal phase. In D. Doyle, G. W. C. Hanks, & N. MacDonald (Eds.), Oxford Textbook of Palliative Medicine (2nd ed.) (pp. 977-992). New York: Oxford University Press.
Waller, A. & Caroline, N. L. (1996). Handbook of Palliative Care in Cancer. Boston: Butterworth-Heinemann.
Zerwekh, J. (1991). Supportive care of the dying patient. In S.B. Baird, R. McCorkle, & M. Grant (Eds.), Cancer nursing: A Comprehensive Textbook (pp. 875-884). Philadelphia: W.B Saunders.