Care for terminal diseases

There are instances when doctors after conducting elaborate tests, examinations and treatments declare that a patient cannot be cured as he or she is suffering from a terminal disease. Such patients are handed over to the family members and require end of life care. It is beneficial for family members to know the approximate time of death so that they can provide emotional, social and spiritual support to the dying patient, their loved one.

A terminal disease is a condition that is ultimately expected to result in the death of the patient, with no cure available. Terminal diseases are typically progressive, meaning they worsen over time, and medicines focus on managing symptoms, improving quality of life, and providing palliative care rather than curing the disease. Common examples of terminal diseases include: advanced cancers (e.g., pancreatic, lung, or brain cancer at late stages), neurodegenerative diseases, end-stage heart disease, end-stage renal disease etc.

End-of-life care focuses on providing comfort, dignity, and quality of life to individuals who are in the final stages of a terminal illness. It typically begins when it is clear that the person is nearing the end of life, and curative treatments are no longer effective or desired. This care is multidisciplinary, involving physicians, nurses, social workers, counsellors, and family members.

Palliative Care focuses on relieving symptoms such as pain, nausea, difficulty in breathing, and emotional distress. Palliative care can be provided alongside curative treatments but becomes central when a patient is near the end of life. It addresses physical, emotional, social, and spiritual needs. Hospice Care is a specialised form of palliative care offered when life expectancy is six months or less, and the patient has decided to forgo curative treatments. Care is typically provided in the patient’s home, a hospice facility, or sometimes a hospital. The goal is to provide a comfortable, pain-free experience with emotional and spiritual support.

In the final days or hours of life, there are physical and emotional signs that indicate a person is nearing death. While the experience varies for each individual, some common signs include: (1) Decreased Appetite and Thirst: The patient may stop eating and drinking entirely as the end approaches. Mouth care may be needed to keep the lips and mouth moist. (2) Increased Fatigue and Weakness: The person may spend more time sleeping and have little energy for movement or conversation. (3) Changes in Breathing: Breathing may become irregular, shallow, or labored, often referred to as Cheyne-Stokes breathing, where there are periods of rapid breathing followed by no breathing. Congestion or a “death rattle” may be heard due to the inability to clear fluids from the throat. (4) Coolness and Mottling: Hands, feet, and other extremities may become cool to the touch as circulation slows. Skin may appear mottled (purplish or blotchy) or pale, especially in the arms, legs, and under the nails. (5) Decreased Urine Output:

The kidneys slow down, leading to reduced or no urine output. Urine may become darker in color. Incontinence or lack of bowel movements may also occur. (6) Changes in Pulse and Blood Pressure: The heart rate may become irregular, weak, or hard to detect. Blood pressure drops as the body begins to shut down. (7) Withdrawal: The patients may become withdrawn, less interested in social interaction, and focused inwardly as they prepare for death.

Finally when the heart stops beating and breathing ceases, death has occurred. End of life signs can be distressing for loved ones, but they are a natural part of the dying process. Hospice teams and healthcare providers can offer support and guidance to ensure the person is comfortable and that their family feels prepared. Comprehensive hospice care facilities are needed for providing specialised hospice care to relieve the burden of family members in taking care of their loved ones.