Family members look to their hospitals, nursing homes, physicians and nurses to help them know what to expect when they or their loved ones are dying. Yet, according to recent studies, few healthcare workers and even fewer patients realize that there is a common final path that most dying patients end up traveling regardless of their diagnosis.

It has been my experience that Americans fear terribly their final days and hours because their expectations have been falsely skewed by television and movie deaths, which depict deaths that are dramatic, sudden and painful. The good news for patients and families is that dying is usually an orderly and rather uneventful affair. We can help to dispel the false expectations that people have by discussing with patients and families the common path taken by most dying patients. However, it is important not to promise patients or families the common path because there are deaths that are dramatic, sudden and painful. Fortunately, these are much less common but with new technologies and the help of the entire hospice team, there is much we can do to alleviate suffering even in the most difficult cases.

What to Expect at the End

I have found it helpful when making home hospice visits to simply ask patients and families the following question: “Most people like to know what will probably happen at the end so they will be prepared, is that true for you?” If they say “yes”, then I describe the ten features listed below and answer any questions that may come up.

1. Social detachment:

It is natural and normal for the dying patient to become detached. Patients become less engaged and less concerned about his or her surroundings. For most patients, the withdrawal is first from the world — there is no longer any interest in television or newspapers, then from friends, then from children and grandchildren, and perhaps even from those most loved. With this normal withdrawal comes less of a need to communicate. Some families interpret this withdrawal incorrectly as anger or as depression — it is important to reassure them that this is a normal part of the dying process.

2. Food:

Dying patients will have a decreased interest in food and drink as their bodies prepare to die. Families sometimes view this as starvation but it clearly is not. Starvation is what happens when a healthy person does not get enough food. It is normal, expected, and not painful when a person who is dying does not eat — it is usually a marker or sign that the patient has entered the dying process. When someone is very ill, the body naturally slows down and there is a gradual decrease in eating habits. Feelings of thirst and hunger gradually diminish. In many people, the stomach and intestines may not even be able to use the nutrition. Liquids usually become preferred to solids. It is important to follow the patient’s lead and not force feed as this can cause abdominal pain and cramping.

3. Sleep:

The good news for most patients and their families is that most people do sleep through their final hours and days. As death approaches, it may even become difficult for patient to keep their eyes open. This is simply part of the body’s slowing metabolism. Family members should be encouraged to spend more time with the patient when he or she is most alert – often this is first thing in the morning.

4. Disorientation:

Disorientation and confusion are two of the most bothersome symptoms for dying patients and their families. Confusion about time, place and identity of people is quite common. The patient may even “see” people who are not there. While these things are usually not distressing to the patient, family members and health care professionals often find it bothersome. The best thing to do is to gently and kindly orient the patient. There is no need to “correct” the patient if he or she is not distressed.

5. Restlessness:

Many patients become restless, pull at bed linens, or attempt to get out of bed. These symptoms often are the results of a change in the body’s chemistry as various organs, which filter the blood are shutting down. A quiet, peaceful and non-stimulatory environment is typically best. Keep the television on low volume, talk calmly with a quiet confidence and avoid over-stimulation in all of the five senses. If the patient is a danger to himself or to others, you may want to ask the physician for a sedative.

6. Decreased senses:

As death approaches, visual and auditory acuity usually decreases. Soft lights in the room may help to keep the patient oriented and avoid visual misinterpretations. Avoid excessive background noises, speak calmly and do not yell into the patient’s ear. Never assume that the patient cannot hear you – hearing is the last of the five senses to be lost.

7. Vital signs:

As death approaches the blood pressure will drop, the heart rate may increase or decrease, and body temperatures fluctuate as patients can become cold to the touch or feverish. Changes in breathing – fast or slow – are very common and there may be periods of apnea (no breathing). Nothing needs to be done for any of these changes.

8. Skin changes:

There is usually an increase in perspiration with clamminess. The skin color often assumes a pale yellowish color. The arms and legs often become cool to the touch. The hands and feet may become purplish while knees, ankles, and elbows often become blotchy and mottled. These are due to a slowing down of the circulatory system.

9. Congestion:

As death approaches, a rattling sound in the lungs or throat is common. This occurs because the patient is too weak to clear the throat or cough. This congestion is often affected by positioning and can become quite loud. Although rarely disturbing to the patient, this can be treated with simple prescription medications. Sometimes just elevating the head of the bed, changing positions and swabbing the mouth with oral swabs will relieve the congestion.

10. Loss of consciousness:

Consciousness is slowly lost in most patients. As death approaches most patients will not respond to touch or to verbal stimuli. Moaning may occur at this stage but it does not always indicate that the patient is in pain.

How to Know That Death Has Occurred

Most people have never been in the same room with a person who is dying and one of the most common fears that I hear from non-medical caregivers is this, “How will I know when my loved one has died? What should I be looking for?” The ten criteria to the right should make this process easier.

  1. No breathing
  2. No heartbeat (pulse)
  3. No movement
  4. Release of bowel and bladder (common at the time of death)
  5. No response to verbal commands or gentle shaking
  6. Pupils enlarged
  7. Eyelids slightly open
  8. Eyes fixed on a certain spot
  9. No blinking
  10. Jaw relaxed and mouth slightly open

After the Death

The death of a loved one is not a medical emergency – nothing needs to be done immediately. The impulse of many families is to call 911. A hospice nurse will make a visit and will also notify the physician. There is no reason to dial 911. The funeral home should be called when all family members are ready to have the body moved. I have found that although an outside presence is usually beneficial, most families prefer to have time alone with their deceased loved one. I will often sit outside the room and talk with family members as they come and go. Platitudes and expressions of sympathy are rarely helpful, in my experience. I simply ask questions about the person’s life. As I leave the home, I thank them for the privilege of caring for their loved one.

Conclusion

Helping patients and families know what to expect at the end helps reduce fear and anxiety, increases confidence, and makes a more peaceful and dignified death more likely. AseraCare Hospice, with its philosophy of addressing suffering in all of the human dimensions (physical, social, emotional, and spiritual) is uniquely poised to help patients and caregivers.