Before I recall for you my memories of the last day that I served as Daddy’s caregiver, I want to share with you some thoughts on end-of-life care.

My experience with Daddy and the ensuing years of nursing school, being a nurse in long-term care, and writing a weekly caregiving column for our local newspaper were my teachers. For additional thoughts on this subject, check out “End-of-Life” in the archives.

Are deathbed proclamations a thing of the past?

The minister was sharing the last words of some well-known people:

“Children, when I am gone, sing a song of praise to God,” Susanna Wesley whispered to her children – including sons John and Charles – just before she took her last breath in 1742 at the age of 73. 

Fittingly, Henry Wadsworth Longfellow’s (1807 – 1882) final words were lyrical: “For the Christian, the grave itself is but a covered bridge leading from light to light, through a brief darkness.” 

American evangelist and publisher Dwight L. Moody awoke from sleep just before he died in 1899 and proclaimed, “Earth recedes…heaven opens before me…if this is death, it is sweet…there is no valley here…God is calling me, and I must go.”

This sermon on dying continued with this insightful observation: “One no longer hears these deathbed proclamations as often as in times past. A reason may be that death no longer occurs naturally at home, but in a hospital or other medical setting where life-extending interventions are being utilized or medication is administered to the point that death proceeds from an unconscious state.”

Research indicates that anywhere from twenty-five to fifty percent of Medicare expenditures (about $170 billion) occurs in the last six months of a person’s life. About twelve percent of older adults on Medicare experience an explosive or “late rise” pattern of healthcare spending in the final months of life – indicating that no cost is being spared to extend life.

Having the talk about end-of-life care is difficult for everyone involved, but it is necessary in order to insure that your loved one receives the desired level of care during the waning days of life. 

Some people, who are physically – but not emotionally – ready to accept the inevitability of death, ask that everything possible be done to prolong life. This could indicate extended hospitalization, possibly in intensive care. If major organs fail, life support interventions such as a ventilator or feeding tube would be utilized. This presents the difficult situation of when to end life-support. I had patients who had been on life support for years. They were unconscious, but their hearts continued to beat. These are controversial circumstances. During a rather vigorous discussion about this subject among some health care workers, an older and wiser nurse shared this astute observation: “Life support does not prolong life; it prolongs death.”

Patients who are already in long-term care facilities (or their family members) often choose to remain there. Along with the doctor, they will make decisions regarding extent of care and whether or not to seek hospitalization. 

When the patient has accepted the reality that death is imminent (usually within six months), doctors often recommend a Hospice home. These homes provide palliative (comfort) as opposed to curative care. Still, the patient (or if unable to do so, the person with power of attorney) must inform the staff what degree of medication is desired. Being “pain free” may also mean being unable to respond. Is limiting medication in order to be aware of surroundings as death approaches preferable?

Research reveals that most people, when they are given a choice, prefer to remain at home and die a “natural death.” This denotes a death that is expected due to the progress of a pre-existing chronic disease. Again, the level of medication should be adjusted according to the person’s wishes. 

One of my patients in long-term care expressed his desire to have his family around him until the end – and he refused both life-prolonging treatment and medication that would make him less aware. As his breathing became slower, family members waited anxiously for the one remaining son, who lived some distance away, to arrive. His sweet daughter moistened his lips with a swab. The family took turns hugging and kissing their beloved father and grandfather as they spoke tender farewells. Just when we thought the son might not arrive in time to say good-bye, he walked through the door. As the son embraced him, a smile crossed his dad’s face and his respirations quickened…and then slowed. We began singing one of his favorite songs – “I’ll Fly Away.” As his lips moved ever so slightly in an attempt to mouth those words, he did indeed,  fly away.

In reality, having the opportunity to choose where you live your last days – as opposed to a sudden, unexpected death – could be considered a blessing. Even more important to consider is just what would be your deathbed proclamation – the last words you utter upon glimpsing where you will spend eternity.

Aggressive or Conservative?

One of the first statements made by my psychology instructor in nursing school was: “In this class we are going to study the human lifespan which begins at birth and ends at death; dying is part of living.”

Even though we all know that death is our destiny, most of us do not enjoy discussing this inevitability. Almost no one wants to interfere with the timing of a natural death (although that group is gaining followers); but what about extending life as long as possible after being diagnosed with a terminal disease?  Would you choose aggressive or conservative end-of-life care?

Aggressive care at the end of life may extend your life but does not cure your illness. Life-sustaining treatments may include equipment that does the work for a no-longer functioning body organ such as a ventilator to help you breathe; dialysis treatments for diseased kidneys; a tube to provide nourishment through your nasal cavity or stomach; or an intravenous tube to provide fluids and medicines. These measures may require a hospital stay, often in intensive care.

Conservative care refocuses management on quality of life over quantity. The medical team provides comfort, family support, and addresses psychological and spiritual concerns. Last days are spent at home or in a hospice facility, instead of a hospital setting. 

Congress passed the Self-Determination Act in 1990 – a law designed to allow patients more control over end-of-life medical care decisions through the completion of advance directive documents (living will, healthcare power of attorney, DNR). This legislation requires health care institutions such as hospitals, nursing homes, home health agencies and hospice providers (but not individual physicians) to provide information about these choices to adult patients upon their admission to these healthcare facilities. 

If you do not take advantage of the opportunity to make your own decisions about end-of-life care, and at some point you are no longer able to make those decisions, someone else will have to make them for you.

Often patients (or family members) do not know what questions to ask the physician concerning continuing treatment once an ominous diagnosis has been made. Some suggestions are: Is there any chance of recovery? Will this treatment extend my life, and if so, how long? What are the side effects and risks? What result can I expect if I refuse this treatment? How does this treatment affect my overall prognosis?

Ira Byock, director of palliative medicine at Dartmouth-Hitchcock Medical Center and author of “The Best Care Possible” asserts, “When patients have a terminal illness, at some point more disease treatment does not equal better care.” 

End-of-life decisions require difficult and personal choices. Many factors influence a person’s options. They include quality of life, past experiences, family influences, and spiritual beliefs. One of my patients lived a good-quality life for five years after being resuscitated – twice! Another chose aggressive care and lived her last five years in a coma, attached to life-prolonging machines. Many chose conservative care and died peacefully, free from pain, and surrounded by loved ones.

Yes, dying is part of living. Talk to your family and health care provider and determine the kind of treatment you want to receive at the end of your life. Complete your advance directives so when the time comes, your choices will be honored and your family will not have to make those hard decisions. In the meantime, live and love abundantly!

Caring Quote: “And on that day when my strength is failing, the end draws near and my time has come; still my soul will sing Your praise unending.” – from “10,000 Reasons” by Matt Redman