As the end of this life approaches, many questions are asked by our patients, their families and caregivers concerning this process and what they may expect. The following descriptions may be used as a guide to aid in understanding the end of life processes. This guide is intended as a general description of what may occur. At no time will this eliminate the impact of what is happening to you or your loved one, but understanding and knowledge can reduce the amount of stress and the confusion these symptoms can produce. Please discuss all of your concerns with your case manager or doctor if any of these symptoms do occur.

Appetite

Many times a patient will experience a decrease in appetite and may even stop desiring food all together. This is not abnormal but a physical sign that organs and the digestive tract are slowing. As the patient’s ability to digest food decreases, the appetite lessens to enable the body to be more comfortable. If the patient is forced to eat during this process, vomiting and discomfort can result. This can also occur with regards to liquids. Forcing fluids is not recommended. Please speak with your case manager regarding your concerns.

Elimination

With the loss of appetite and less physical exertion, a decrease in bowel activity also occurs. Pain medication can also add to the bowels slowing down. Laxatives or stool softeners may be necessary to maintain regular bowel functions. As death becomes imminent, bowel function may simply stop all together. Urine output may change in frequency and amount while becoming darker in color. Again, please consult your case manager or doctor for further guidance to preventing discomfort.

Respiration

Breathing patterns are also affected by the dying process and may include lung congestion, shortness of breath, apnea (periods of not breathing for 5 to 60 seconds), air hunger and Cheyne-Stokes respiration (very irregular, shallow breaths in an alternating fast-slow pattern). An accumulation of fluid and mucous, sometimes produced by excessive fluid intake, can create what at one time was referred to as “the death rattle”. Medications, medical suction or simply decreasing fluids can help alleviate or decrease the rattle in the upper respiratory system. Please remember that upper airway rattling is not something that is painful for the patient and is usually viewed as being more unpleasant for the caregivers. It is best to simply keep the patient as comfortable as possible and report any concerns to the case manager for review and alternatives.

Circulation

As the heart progressively slows, circulation throughout the body tends to diminish. This is often initially noticed by coolness or coldness of the hands and feet and also by visible signs of discoloration and mottling as blood pools in the body’s extremities. Fluids at times may also tend to pool in certain areas causing the swelling of limbs and profuse sweating. As the kidneys fail, urine output may decrease, but depending on the individual, it may even surprisingly increase. Changes in body temperature may also occur and are expected as the final process begins.

Sleep Patterns

Most patients as they approach death find they sleep more frequently and may even be compared with the sleeping patterns of infants. Physiologically, as the patient’s systems decrease in function, more sleep is necessary for obtaining physical strength. Many feel the additional sleep is also needed to provide the patient both spiritual and emotional realms as an avenue to resolve issues from their past. Most psychologists and doctors feel that the dream / sleep state often is where resolution occurs and this can create a huge sense of peace for the patient.

Confusion & Disorientation

Confusion, disorientation and even hallucinations are not unusual as death nears. This can be caused by age, stress, disease, medications, metabolic imbalance, neurological damage or lack of oxygen to the brain. These symptoms are often normal for hospice patients, but a medical professional should be consulted to determine the cause. Many approaching death often talk of “seeing” people. Treat these visions as being real, as more than likely they are, but at the very least remember the patient’s perception is their reality and what they are sensing should be addressed with respect.

Pain

Zion’s Way specializes in pain management, which includes both medication and supplementary alternatives to alleviate discomfort. Every patient is unique and therefore the approach towards pain management is individualized for each client by their case manager. The medical director and physician, the patient’s doctor, the case manager and especially the patient themselves will all have information to best enable the team to correctly address pain in the best way possible.

The Senses

The senses connect people to the outside world allowing them the means and ability to communicate with others. During the dying process, physical senses may become hyper or under active. Vision may become blurred and taste and smelling sensations may diminish. Always assume the person, no matter what their condition, can hear, as the sense of hearing is considered the last to cease functioning. Although verbal communication may lessen, the simple act of gently touching someone is an effective way to remain connected with a loved one. By indirect lighting, soft music, story or poetry readings and sharing memories, caregivers and the Zion’s Way team can create a comfortable, compassionate setting whether in a home or facility.