TIPS FOR PROVIDING CARE AT THE END OF LIFE

Caring for a loved one during the dying process can be a frightening, stressful and exhausting undertaking.  It can also be seen as the ultimate act of love shown to a loved one. To help you with through this process, LMHPCO is providing you with information not only on what to expect as death approaches but also suggestions on some common sense actions to take when caring for the patient and making them as comfortable as possible.

As death approaches the body will go through the normal dying process giving evidence to the body shutting down. When this happens the patient may exhibit some or all of the following symptoms:

 1. Decrease in body temperature 
As death approaches, the body's organs begin to shut down, the hands and arms, as well as the feet and legs become increasingly cool to the touch and may change in color(cyanosis). This is a normal part of the dying process, indicating the decreasing ability of the body to circulate blood to the body’s extremities. The body is  reserving energy in order for the most vital organs to function.

Suggestion for the Caregiver:

Provide warmth with a blanket; but do not use an electric blanket.

2. INCREASED SLEEPINESS
Increasingly time is spent sleeping.  Allow the patient to sleep. Provide a quiet and peaceful environment. The patient may appear uncommunicative, unresponsive and even difficult to arouse. This is a normal part of the dying process, indicating changes in the metabolism of the body.
Suggestion for the Caregiver:

Sit with the patient and hold their my hand.
Do not shake them or speak loudly.
Speak softly and naturally.
Spend time with them when they appear most alert and/or awake.
Never talk about the patient, in their presence, as though they are not present.
Speak directly to to the patient (as you would normally), even when they appear non-responsive.
Never assume that the patient cannot hear you.
The sense of hearing is the last sense to be lost.

3. INCREASED DISORIENTATION
As the dying process proceeds the patient may seem confused about time, place and the identity of the people around them, including those closest to to them and most familiar to them. This is normal due to the metabolic changes taking place within the body. Patients will often speak with deceased loved ones.

Suggestion for the Caregiver:
Always identify yourself when speaking to the patient. 
Never ask the patient to “guess” who you are.
Speak softly, clearly and truthfully when you need to communicate something important.
Offer reminders " It is time to take your medication” and even explain, “so you don’t begin to hurt."

4. Increasing IncontinenCE ( loss of bowel or bladder control)
As the muscles in the body begin to relax, the patient may lose control of their urine and bowel movements. This is a normal part of the dying process but also one of the most difficult aspects of the dying process to emotionally accept.

Suggestion for Caregiver: 
Check the patient often to make sure they are clean and dry.
Consult with the hospice nurse about what can be done to protect the bed and keep the patient clean, dry and comfortable.

5. INCREASED CONGESTION
As a result of decreasing amounts of fluid intake by mouth and an increasing inability to cough up normal secretions, you may hear a gurgling sound come from the patient's chest. Some people have reported that it sounds as though marbles are rolling around inside of their throat. This is a normal part of the dying process. These are sounds of congestion and do not necessarily indicate pain and/or discomfort.

Suggestions for the Caregiver:
Gently turn the head to the side and allow gravity to drain the secretions.
Gently wipe the mouth with a moist cloth, and remember: “Suctioning the secretions from the throat usually only increases the amount of secretions and can cause a great deal of discomfort.”

6. INCREASED RESTLESSNESS
The patient may appear restless and repeatedly pull at bed linens and/or clothing. This is a normal and natural part of the dying process as less oxygen is circulating to the brain and metabolism changes.

Suggestions for Caregiver:

Do not try to stop the patient from doing this by restraining them.
Be calm and reassure the patient by speaking to them quietly, normally, and naturally.
Lightly message the forehead, read to the patient or play soothing music.
Provide a gently touch and offer loving words.

7.  DECREASED URINE OUTPUT
The output of urine will decrease and may become tea colored. This is a normal and natural part of the dying process due to the decreasing intake of fluid, as well as decreasing circulation of fluids through the kidneys.

Suggestions for the caregiver:

Consult with the hospice nurse to consider whether the patient may need a catheter or the catheter needs to be irrigated.

8. DECREASED DESIRE FOR FLUID AND FOODS
As part of the natural and normal part of dying, the appetite and thirst will likely decrease. The patient may not even want to eat and/or drink. Do not "pressure" them to eat or drink. As the body begins the process of “shutting down”, it becomes increasingly more difficult to process food and fluids and the desire for food decreases.

Suggestions for the Caregiver:
Never force the patient to eat or drink and do not use guilt to manipulate them into eating and/or drinking. (This only makes them feel more uncomfortable.)
Offer small chips of ice, frozen Gatorade or juice to refresh their mouth.
If the patient is unable to swallow, small amounts of fluids may be administered with a syringe.
(Consult with the hospice nurse about using a syringe in this way.)
The  hospice nurse can also supply glycerin swabs to keep the mouth and lips moist and comfortable.
A cool, moist washcloth on the forehead is usually comforting.

9. CHANGES IN BREATHING PATTERN
Regular breathing pattern will probably change. You may observe the patient's breathing having a different  pace. The breaths may appear irregular. The patient may appear to be taking only shallow breaths, with periods of no breaths for 5-30 seconds; maybe even up to a minute long. This is often called “Cheyne-Stokes” breathing.The patient may also experience periods of rapid, shallow pant-like breathing. These common signs of approaching death indicate the decreased circulation of fluids through the internal organs.

Suggestions for the caregiver:

Elevate the head and/or turn the patient onto their side.
Hold their hand and speak gently and softly to them.

10. UNRESPONSIVENESS
Unresponsiveness is caused by changes in metabolism that occur as the body shuts down.
Suggestions for the caregiver:
Plan visits and activities for times when your loved one is most alert
Speak directly to them and talk as if they can hear, even if they are not responsive.
Speak "to" your loved one and not "about" them.
Most patients are still able to hear even after they can no longer speak.
Do not attempt to shake or rouse your loved one if they are unresponsive.