Holle Janeski, D.O., F. A.C.O.I. March 12, 2015

 Sequence of events and progression of disease  What happens when the body shuts down  When does care of a patient become non- beneficial

In the 1900’s life expectancy was 49 years old…sudden death Increasing life expectancy means coping with serious chronic illnesses…slow death  In 2000 the life expectancy in our patients is 80 for women and 74 for males  In 2050 the life expectancy will increase to 84 for women and 80 for men

 Families struggle with managing pain and symptoms  Coordination of care among multiple providers and settings  Ensure that treatments reflect preferences and benefits outweigh the harm  Achieve empathetic communication and care  Fostering well-being (spiritual concerns)  Maintain function  Support family and caregivers throughout illness and bereavement

CANCER CONGESTIVE HEART FAILURE COPD DEMENTIA

Cancer patients experience a predictable decline and are often served by hospice in the final weeks.

 CHF and COPD patients have impaired function punctuated by unpredictable, severe illness and rather sudden death.  Rarely have hospice involved.

 Dementia patients have prolonged decline and often reside in nursing homes.  Rarely utilize hospice care in the nursing home due to financial constraints for family.

 Loss of Appetite: Energy needs decline. The patient may resist food of any kind…even their favorite.  Near the end the dying person may be physically unable to swallow  How to respond: Do not force feed.

 Excessive fatigue and sleep: the patient begins to sleep the majority of the day and night.  They may be difficult to rouse from sleep.  Awareness of immediate surroundings decreases  How to respond: Permit sleep. Assume, however, that everything you say can be heard.

 Increased physical weakness: A decline in food intake and lack of energy leads to less energy, even for activities like lifting one's head or shifting in bed. The person may even have difficulty sipping from a straw  How to respond: Focus on keeping the person comfortable.

 Mental confusion or disorientation: Organs begin to fail, including the brain. The person may not be aware of where he or she is or who else is in the room, may speak or reply less often, may respond to people who can't be seen in the room by others.  How to respond: Remain calm and reassuring. Speak to the person softly, and identify yourself when you approach.

 Labored breathing: Breath intakes and exhales become raggedy, irregular, and labored.  Sometimes excessive secretions create loud, gurgling inhalations and exhalations that some people call a "death rattle."  How to respond: The stopping of breath or loud rattle can be alarming to listeners, but the dying person is unaware of this changed breathing; focus on overall comfort.

 Social withdrawal: As the body shuts down, the dying person may gradually lose interest in those nearby.  A few days before receding socially for the last time, the dying person sometimes surprises loved ones with an unexpected burst of alert, attentive behavior.  How to respond: Be aware that this is a natural part of the dying process and not a reflection of your relationship.

 Changes in urination: Little going in means little coming out. Dropping blood pressure, which is part of the dying process (and therefore not treated at this point), also contributes to the kidneys shutting down. The concentrated urine is brownish, reddish, or tea-colored.  How to respond: Hospice medical staff sometimes decides that a catheter is necessary.

 Swelling in the feet and ankles: As the kidneys are less able to process bodily fluids, they can accumulate and get deposited in areas of the body away from the heart, in the feet and ankles especially. These places, and sometimes also the hands, face, or feet, take on a swollen, puffy appearance.  How to respond: Usually no special treatment (such as diuretics) is given when the swelling seems directly related to the dying process. (The swelling is the result of the natural death process, not its cause.)

 Coolness in the tips of the fingers and toes: In the hours or minutes before death, blood circulation draws back from the periphery of the body to help the vital organs. As this happens, the extremities (hands, feet, fingers, toes) become notably cooler. Nail beds may also look more pale, or bluish.  How to respond: A warm blanket can keep the person comfortable, or he or she may be oblivious. The person may complain about the weight of coverings on the legs, so keep them loose.

 Mottled veins: Skin that had been uniformly pale or ashen develops a distinctive pattern of purplish/reddish/bluish mottling as one of the later signs of death approaching. This is the result of reduced blood circulation. It may be seen first on the soles of the feet.  How to respond: No special steps need to be taken.

 Food for thought…last sign of end of life: Smoke or vapor from the mouth???  How to respond: Pray for the soul!!

Often called “futile care”

Patient: Has fear of death Family: “do everything possible” and “spare no expense” even if it is clear that the patient will not recover Physician: “I’ll save this patient”

 Mechanical ventilation employed on a patient in a permanent vegetative state.  Attempting CPR on a terminally ill cancer patient whose death is imminent and experiencing unremitting pain/discomfort or is under heavy sedation.  Tube-feeding in a patient with multiple organ failure whose condition is irreversible.

 A situation where either the likelihood of benefiting the patient is so small as to be unrealistic or the quality of the benefit gained is so minimal that the healing goals of medicine are not being achieved. There is judgment in futility and it requires a value decision. We must decide when to stop “doing things to” patients and start “doing things for” patients.

When a patient or family member insists on continuing futile treatments, the health care team has no obligation to provide such treatments. Providing futile treatments often violates the health care provider’s duty not to harm. The use of futile treatments should be avoided because it wastes society’s resources.

 Do not abandon the patient or the family. Offer comfort and support to patients and loved ones.  Small acts: hold patient’s hand, moisten lips, talking and listening to patient and loved ones.

Rather than view the end of life as a medical failure, health care professionals should instead regard death as a planned-for and natural event. Rather than understanding the impending loss of a loved one as an occasion to defy death, family, clergy, and friends should instead help patients and family to face death with courage and dignity.

Questions???