Making Sense of How We Die
The changes that occur as a person is nearing death are many and varied. For, most, however, the concept of diminishing energy provides a framework for viewing, understanding and anticipating this naturally occurring process.
The body is an efficient machine. Most people are aware of the famous "fight or flight" syndrome. In a dangerous situation, the body shifts its blood supply and thus its energy to areas needed for optimal functioning in a crisis. You need to be able to think quickly. You need your heart and lungs to work more efficiently to provide the stamina to either fight or “Get out of Dodge,” and you need muscle strength to fight or run like crazy. Conversely, you are not likely to think of your next meal while trying to avoid becoming the next meal for a saber tooth tiger, so the energy normally devoted to your digestive tract will be shifted to where it is most needed.
Almost every change that occurs as a terminal condition progresses towards death can be understood by this principle. When energy resources are limited, some things simply have to go. It is not a conscious decision on the part of the dying person, it simply happens. Breathing becomes more important than digesting food. Eventually, as more and more activities and functions take away more energy than they give back, they will simply cease to be important.
INCREASED NEED FOR REST
When a terminally ill person becomes weaker, sleeping or resting becomes a way of conserving as well as restoring energy.
There are many different levels of consciousness from wide awake to a deep sleep. Most common at this time will be a "rest" mode in which a person disengages from the environment, usually, but not always, with closed eyes. The person will return to a wakeful state with only minimal stimulation. I see my ninety-two year old mother doing this at family gatherings; when the bustle gets to be too much, she simply "zones out" for a little while. When she has rested, she will re-engage, and only a few will have noticed her "absence".
Increased sleeping and resting is often blamed on medications. Caregivers, especially, have that concern because every waking moment is now precious. It is true that many medications used for symptoms management in end stage disease have sedative side effects. Medication is not usually the culprit; there is simply less energy to interact with others. An overmedicated person will present a little like a drunk with slurred speech and slowed mentation. If your loved one is pretty much his or her usual self when awake, then you can rest assured that the increased need for rest is NOT related to medication.
There will be a continual shift in the balance of wakefulness and sleep and, toward the end of life, the predominant level of consciousness will be in the "rest" mode. A dying person does not always go into a coma. Towards the end of life, a dying person will simply not have the energy to respond to the environment, but will most likely be aware, on some level, of the people around them.
FOOD AND FLUIDS
This is probably the most worrisome of all for the person caring for a terminally ill person. So many common truths no longer apply, but they are difficult to silence. "You have to eat to keep up your strength" is appropriate when a person is expected to recover and return to "normal". In a terminal situation, however, breathing becomes more important than digesting food, and food, when taken in even small amounts can take away more energy than it gives back. Think of the last time you had a large meal like a thanksgiving dinner, and remember the lethargy that ensues when much of your energy is diverted to your digestive tract.
Fear of starvation is common. However, most people who have ever tried to lose weight know that the pounds do not rattle off because you miss a meal. A person in a weakened condition, who does not expend much physical energy, does not require much nutrition to maintain vital functions. Let me try to put this into perspective for you. It takes three thousand five hundred calories to gain or lose a pound of body weight. If you take in five hundred calories per day less than the amount your body requires, you will lose only one pound per week.
Fluid intake will also decrease. This will actually reduce the work load for the heart in the final days. When people carry more fluids than their hearts can handle, the extra fluid will show up most commonly as swelling in the extremities, the areas furthest away from the heart. If a person is up and about, gravity will take the fluid to the feet and ankles. When a person's heart grows weaker, it can no longer pump around the six quarts most healthy persons carry, and when a person is weak and bedfast, excess fluids will take the path of least resistance an accumulate in the lungs making breathing more difficult. It is important to understand that in the final days and hours, dehydration is not an enemy to be feared but a friend that helps ease the passing.
Hospice is an old English word meaning "way station for weary travelers". Hospice does indeed provide comfort and solace for people nearing the end of their journey through life.
Hospice care encompasses a wide range and scope of services intended to provide holistic care, not just for the terminally ill, but also for their families. The hospice team includes hospice physicians, nurses to manage the care in the home and ensure appropriate symptoms management, Home Health aides to assist with personal care, social worker for both practical and emotional support, chaplain services for the spiritual needs, therapies when needed for safety and energy conservation, volunteers to support both the patient and caregiver in a variety of ways, and bereavement services to support the family through the first year after the death. In addition, hospice provides medical equipment as needed and also provides medications required to ensure comfort throughout. Hospice care is provided through Medicare, Medicaid and insurance. Non-profit hospice organizations also provide no-cost or low-cost care for uninsured patients.
Quality of life is an all-important concept. Leaving this world is an uncharted course. It is comforting to know that you and your family do not have to travel that road alone.
Myth #1: Hospice is for the last few days of life.
Fact: Hospice is for persons who have a life expectancy of six months of less. Some have benefitted from hospice care for a year or longer.
Myth #2: Hospice means you are giving up.
Fact: Ceasing to do something that is not working for you is not giving up. Hospice means you are choosing to spend your time and energy differently.
Myth #3: Hospice means you die sooner.
Fact: Hospice care is not intended to either shorten or extend a person's life expectancy. Research indicates that people actually live longer, once their anxieties and their distressing symptoms are being managed. Hospice helps you make the most of however much time you have.
Myth #4: Hospice is only for cancer patients.
Fact: Hospice is for anyone nearing the end of life with a six months or less life expectancy. This can be either a person is suffering from a terminal illness or someone who is simply is old and tired. Life itself is a terminal condition; it is OK to die of old age.
Myth #5: Hospice is only there to care for the patient.
Fact: Hospice treats the family, not an individual patient, as the unit of care. A terminal illness affects every member of a family from the young to the old.
Myth #6: Hospice is a place.
Fact: There are indeed hospice facilities; however, the vast majority of hospice patients receive care in their primary residence whether that is a home or a skilled nursing facility. Hospice is a concept - a philosophy - not a place.