Goal of Comfortable Death and Dignity
By Vijaya Polavaram, M.D.

When death is imminent, it is important to have an organized team to handle issues of the terminally ill. There are physical, psychological, social, and spiritual aspects of suffering. Palliative Care has the goal of providing comfort to the patient and the emotional acceptance of the event by the patient as well as by the family members.

The word terminally ill is defined as when life expectancy is six months or less. Typical patients with a terminally ill prognosis are cancer sufferers, HIV with AIDS, and severe cases of heart failure or emphysema. An individual in such a scenario may undergo immense sadness, grief, anxiety, depression, and extreme pain.

Pain affects approximately 80 percent of cancer patients before death. Good or excellent pain control can be achieved in most cases with appropriate medications. The patient, the patient's family and medical staff should function as a team, working toward the relief of pain. Key factors in working together are communication, psychosocial care of the patient and family, symptom control, and coordination of care. In cases of advanced disease, there is also a need to discuss managing complications associated with the disease.

Total pain is a term developed to describe the complex etiology of pain including its physical, emotional, social, economic, and spiritual components. Total pain recognition provides the most fundamental framework for patient assessment at the end of life. Physicians play a major role in assessing the multiple domains of suffering in the process of caring for the whole person. The patient's sense of body image, sense of the past, sense of future, what the illness means to them, and the person's desires, secrets, families, friends, values, and spiritual beliefs must be considered on par with the patho-physiology of the patient's disease.

In the last three decades, a concept known as hospice care has developed to handle the issues of the terminally ill. The concept of hospice is an ancient one, dating from the middle ages when hospices were set up as places of rest for pilgrims and other travelers. At the end of the 19th century, hospices were designated specifically to care for the terminally ill, first in Ireland, and later in England. Almost thirty years ago, St. Christopher's Hospice in London opened under the direction of Dr. Cicely Saunders. The philosophy and practice of St. Christopher's program has since spread throughout the developed world as well as to many developing areas. Hospice care is centered upon an interdisciplinary team that collaborates to provide comprehensive care to handle issues of the terminally ill and to prepare patients and families for acceptance of the inevitable event.

The hospice philosophy embraces the general principle of a comfortable death with dignity. There are both advantages and disadvantages with the hospice approach.

• Comprehensive interdisciplinary care;
• twenty-four hours per day, seven days per week access to care;
• reduced out-of-pocket expenses for medications, durable medical equipment, etc.;
• broad range of nursing, psychosocial, and pastoral care services; and,
• coverage for all age groups.

There is one major disadvantage to the hospice program (in the eyes of both the physician and the patient) since hospice care implicitly restricts access to other aspects of treatment. Medicare provides a fixed sum of money, paid on a per diem basis, from which all medical care and services provided must be paid. Items such as a chest x-ray or a blood test, which the attending physician may feel is warranted to provide care for the terminal illness, become the financial responsibility of the hospice as part of the hospice benefit. This financial restriction puts the hospice administration under pressure to reduce or prevent patient access to the acute medical care system.

Hospitalizations are usually discouraged once a patient is enrolled in a hospice program. The hospice benefit allows admissions to the hospital for short-term symptom-related admissions, but the definition is imprecise. Specific anticancer treatments, including participation in Phase I clinical trials, are not allowed as they are considered life prolonging.

• Nutritional Needs
The goal should be to provide comfort, not to prolong life.

• Hydration
One of the most difficult aspects in the management of terminally ill patients is the decision regarding artificial hydration when patients develop reduced oral intake because of profound anorexia, dysphasia, bowel obstruction, or severe nausea and vomiting. Arguments for artificial hydration in these circumstances include:

• Dying patients are more comfortable if they receive adequate hydration.
• There is no evidence that fluids alone prolong life to any meaningful degree.
• Dehydration and electrolyte imbalance can cause confusion, restlessness, and neuromuscular irritability.
• Water is administered to dying people who complain of thirst.
• Intravenous hydration is the minimum standard of care; discontinuing this treatment breaks a bond with the patient.
• Withholding fluid to the dying patient sets a precedent for withholding therapies to other compromised patient groups.

• Interference with acceptance of death.
• Comatose patients do not experience pain, thirst, etc.
• Fluid may prolong the dying process.
• Less urine output means less need for bedpan, urinal, commode, or catheter.
• Less gastrointestinal fluid and less vomiting.
• Less pulmonary secretions and less cough, choking, and congestion.
• Minimizes edema and ascites.
• Fluid and electrolyte imbalance may lead to decreased levels of consciousness and decreased suffering

The ultimate decision on fluid management, when it comes to the artificial fluids, is primarily patient's choice, followed by the family's preference.

• Oxygen therapy (shortness of breath) provides major comforting in the last days/hours.

• Insomnia issues.

During the last hours of life, family members may want to be advised of the possible events such as progressive unresponsiveness, purposeless movements or facial expressions, noisy breathing, and unlikely periods of awareness just before death. The care team should discuss possible acute events as well as agree on action plans should such events occur. Medical personnel should provide answers to any questions the patient or family may have as well as provide a phone number (24 hours) the family can call should they need help. Family members should inform the medical personnel of previous deaths in the family along with instructions as to what should be done once the loved one has passed on.

Euthanasia and physician-assisted suicide (PAS) are two different concepts. The term euthanasia without a qualifying phrase means voluntary active euthanasia; that is, the physician intentionally ends the patient's life at the patient's request and with the patient's full informed consent. Euthanasia is not legal in any state in the United States. PAS refers to the physician's act of providing medication, a prescription, information, or other interventions to a patient with the understanding that the patient intends to use them to commit suicide. In the United States, this is currently legal only in the state of Oregon. Surveys show 66 percent of the public supports both euthanasia and PAS for a terminally ill patient with unremitting pain; 29 percent support euthanasia because a terminally ill patient feels life is meaningless, while 33 percent support PAS in the same circumstances.

Dr. Polavaram specializes in internal medicine and is the owner of Capital Primary Care with offices in Cary and Raleigh.

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