This article is more than 5 years old. Information may no longer be current.
Educate patients and families for the end of life
Click Here to Manage Email Alerts
All medical school curriculums teach students anatomy, physiology, pathophysiology and pharmacology. The processes and explanations for each of the subjects start from birth and ends … well with disease management. The normal process of death is rarely, if ever discussed. Many times patients with cancer and their families wonder and ask about death and physicians should be able to answer their questions.
There are several resources that may help. Here is a review of Fast Facts from End of Life/Palliative Care Education Resource Center, which is available at www.eperc.mcw.edu/fastFact/ff_149.htm). A review of what is to be expected at the end of life can help reduce a patient’s or their family’s anxiety. In addition, normalizing potential symptoms at end of life can reduce the impact that those symptoms have on both the patient and their family.
|
|
Based on observations, there are several symptoms that are more likely to occur weeks to days leading up to the death, while there are others that occur days to hours prior to death. These distinctions allow for educating and preparing patients and families for the symptoms, and potential interventions for management of symptoms.
The overall goal of this conversation is to minimize the emotional and mental trauma for the living by normalizing the expected symptoms and experiences of the patient and families.
Weeks to days
In my experience, one of the most important question deals with expression of love, and in many cases, love is expressed through food. Many, if not all families and cultures, may use hand-feeding as expression of love. At the end of life, hunger and thirst are diminished and overfeeding can cause distress to patients. When educating families, it is important to stress other ways to express love including physical touch and caring. Advise them to let the patient dictate how much and when they want to eat to minimize suffering.
Although the physical and mental activity level generally declines over time, patients may have burst of physical energy in the days leading up to death. Sometimes, this may causes patients or families to question decisions made about end of life care.
Overall, patients can become more or less withdrawn from their surroundings and alter their routine. Patients routinely have altered sleep cycles and may become delirious at times. They may have hallucinations, including seeing and talking to people who are already dead. If these symptoms are distressing to the patient, then they can be managed by antipsychotics such as haloperidol, or anxiolytic such as lorazepam.
Pain, a very concerning symptom for patients, is typically not an issue for patients who do not have preexisting pain. However, if they have existing pain, medications may need to be changed based on an assessment of vital signs and facial expressions (ie, grimace). Patients may have skin breakdown, which can be painful, so frequent turning when a patient is amenable is helpful to prevent ulcers.
Days to hours
The most well known symptom that occurs days to hours before death is sometimes called the “death rattle” — a noisy breathing sound due to secretions that are not cleared in the throat. By this time in a patient’s life they are bed bound with decreased mentation. This is a very distressing symptom for families as it sounds like the patient is having difficulty breathing. This may be prevented by placing a scopolamine patch prior to the symptom occurring, which is usually after a patient has decreased activity and mentation. Even if it is not prevented, it can be easily treated once it is recognized.
A patient’s temperature and breathing may also change. Typically, the body temperature is decreased, but some patients may have fevers. Extremities may be cool to touch with skin changes that reflect mottling. Their breathing may become more shallow or deep, or rapid or slow. Although they may continue to have waxing and waning consciousness, overall, they may become less responsive to verbal and tactile stimuli.
When a patient has stopped breathing and is not responsive is when death is suspected. Family members should call the hospice nurse or doctor at that time.
Biren Saraiya, MD, is an Assistant Professor at the Cancer Institute of New Jersey at UMDNJ-Robert Wood Johnson Medical School and is a member of the HemOnc Today Editorial Board.