It is human nature to hope for a cure or at least a reprieve in the face of a terminal illness, but for most people that reprieve never comes. Instead, their illness progresses and they enter the active dying process.
During this process, the dying person is non-responsive or only minimally responsive. He or she stops eating and drinking; vital signs may change rapidly. Loved ones may notice changes in the dying person's circulation with the hands and feet taking on a blue or purple mottled look.
The active dying phase can be a difficult time for families and friends. They feel that they should be doing something, but aren't quite sure what that something might be. Some families may panic and call 911 – "I can't just sit here and watch her die!" – even if the patient has expressed a preference for comfort measures only.
This article suggests several ways to provide meaningful help to your dying loved one. There are ways you can enhance your loved one's physical, emotional, and spiritual comfort as death approaches.
Physical Care of the Dying Patient
Physical comfort is a big issue during end of life care. If your loved one has taken scheduled pain medication during his or her illness, make sure your loved one continues to take that medication on a regular bases.
Since the dying person generally cannot swallow, the doctor or hospice nurse will probably suggest giving the medication in the form of a gel that is rubbed on the skin or as a liquid that is placed into the pocket of the cheek and absorbed directly into the membranes of the mouth.
Along with giving your loved one his or her scheduled pain medication, be alert for signs and symptoms of pain or discomfort. These may include groaning, grimacing, restlessness and labored breathing. If you notice these symptoms, talk to your doctor or hospice nurse. He or she may want to increase the dose of your loved one's pain medication, add medication for breakthrough pain, or introduce medication for anxiety.
There are other things you can do to promote physical comfort as well. Keep your loved one's lips, tongue and mouth moist with glycerin swabs or toothettes. Do not offer sips of water unless your loved one is alert enough to sit up and swallow.
Keep your loved one's skin clean – a catheter can be used to drain urine from the bladder and an adult diaper may be used for bowel incontinence. If you can do so without causing your loved one great discomfort, change his or her position regularly to avoid pressure ulcers.
You can also provide great comfort by rubbing lotion into your loved one's hands and feet or simply by sitting quietly at your loved one's side and holding his or her hand.
Emotional Comfort of the Dying Patient
Most people are afraid of dying – not so much of being dead, but of the moment of dying. They fear the pain, loneliness and the unknown. When you hear terminally ill patients express such fears, your first instinct may be to deny the issue – "Don't be silly! You're going to outlive us all."
This kind of denial, however, helps no one and leaves you loved one isolated at a time when he or she desperately needs understanding and reassurance.
In her book, Sacred Vigil, Marty Hogan, MSW, LCSW suggests a very different approach. Swallow your own fear and denial, make physical contact with your loved one and gently confirm that, yes, barring a miracle he or she is dying.
Once you have choked your way through these forbidden words, you are then free to share many comforting thoughts with your loved one: you can reassure your loved one that he or she will not die in pain; you can share your favorite memories of your loved one's life and emphasize the good in your loved one's existence; you can tell your loved one you understand he or she has to go, and that you will survive; and you can encourage your loved one to relax and let his or her body do what it has to do.
Barbara Karnes, RN, an experienced hospice nurse, suggests in her booklet, The Eleventh Hour, talking to dying patients in metaphors and analogies. You might, for instance, describe your loved one's body as an old broken down car that the soul has been using to get around on earth. Now, however, it is time for the soul to climb out of that rusty vehicle and walk free.
Spirituality and End of Life
Many family members come together with the support of their minister, rabbi, or hospice chaplain, to pray, sing spiritual songs, and read scripture during the last few days of life.
Of course, it is always important to respect the religious beliefs of the dying person. An atheist or agnostic, for instance, will feel uncomfortable being at the center of a prayer circle. Accept the dying person's spirituality for what it is, and do not attempt to force a death bed conversion.
If the family and friends are religious, but the patient is not, perhaps a religious leader can guide the family in prayer outside of the sick room.
Presence and Privacy
Once physical, emotional and spiritual needs have been adequately addressed, you may find there is little more that needs saying or doing. Now is the time to simply sit quietly with your loved one as you meditate, pray, or reflect on your time together.
Do not forget, the dying patient also needs some privacy. No one likes being hovered over 24/7. Make sure your loved one is as comfortable as possible and then, telling your loved one you will return soon, slip out of the room. Check back every 15 to 20 minutes to observe for discomfort or anxiety.
Do not be surprised to walk back into the room and find that your loved one has died. Many people prefer to complete the final act of life alone.
Be proud of yourself that you were able to respect your loved one's wishes and act as his or her companion and midwife during the transformation from being alive to not being alive.
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