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Caring for the terminally ill

End-of-life care is about respecting the dignity of the ailing person, and allowing them to live their last few days in serenity

Having taken care of his father who was suffering from cancer for the last three years, Mahesh was devastated when the doctor informed him that the cancer was in the last stage. Despite being a caregiver for so many years, the feeling of losing his father was quite overwhelming and he was filled with grief and pain. He did not know how to handle this situation.  

This fictional narrative has been constructed to aid the understanding of the condition by placing it in a real life situation.

Caregiving itself is a difficult and exhausting responsibility, but it becomes even more daunting when one has to take care of a person who is terminally ill (cancer, AIDS, Alzheimer's, age-related complications, etc). The diagnosis of a terminal illness can cause a lot of pain to the caregivers and family members. When the doctors inform the family about the condition, the family goes through a range of emotions, and each person reacts differently. They may first go into a phase of denial. After some time, they try to find out if different treatment methods could possibly cure the illness. But when they realize that nothing can stop the inevitable, they relent and accept the reality.

The caregiver may worry about the uncertainty of medication and treatment, providing end-of-life-care, how long the person will survive, how to disclose this information to the person, and so on. As the person's condition deteriorates, they may become totally dependent on the caregiver. This can cause a lot of stress, as the caregiver struggles to care for them while managing their daily activities. During this time, the caregiver will need a lot of support from family members and friends.

Providing support as a caregiver

Caregiving for the terminally ill is harder than we can imagine; nevertheless, caregivers can make an effort to manage the situation:

  • Maintain a sense of control: Each person reacts differently when they come to know about their terminal illness, and it is natural that they feel sad. As a caregiver, try to maintain a sense of control and provide emotional support. Family members can also spend more time with the person. 

  • Plan early: Experts advise that the family should plan early and make practical decisions about care by consulting the ailing person when they are still in a position to make decisions on their own. This helps the family cope with the situation better. If there is no planning, then the caregivers may not be prepared to handle things in the last stages.

  • Communicate often: One of the most important things is to communicate openly and honestly as often as possible about all things related to the family and the person's life. Include the person in family conversations or discussions. Encourage the person to share their deepest thoughts and feelings, ask if they have any wish that could be fulfilled, and so on. In case of patients who have a severe memory loss, you may not be able to communicate in the same manner.

  • Maintain routine and normalcy at home: Try to maintain a routine for all their daily activities. This will set a structure to the person's routine, and will keep them occupied as much as possible. Take them to social gatherings, celebrate moments of togetherness and maintain a normal environment at home to the extent possible. This will enhance the person's sense of dignity and self-worth.  

  • Manage legal and financial matters:  When the person is in a stable condition, encourage them to handle all the legal and financial matters (making a will, property, money, etc), and make appropriate decisions. In this way, the person will be satisfied that things are sorted as they wish, and you are also relieved of any complications that could arise later.

  • Seek support: As the person's condition deteriorates, they can become more dependent on you for all their daily activities (bathing, dressing, feeding, using the toilet, and grooming). You need to be prepared for this change. If you find it difficult to manage on your own, ask the family members to help, or hire a full-time nurse or a caretaker.

  • Support spiritual concerns: Each person will have their own beliefs and faith. For some, religion may be very important; it may give meaning to both, their lives and their dying. Depending on what their need is, you can support them accordingly. For example, they may want the priest or clergy to pray for them, they may want to listen to religious songs or hymns, or listen to verses read from a holy scripture, and so on.

  • Choose palliative care: A team of trained professionals provide this specialized medical care along with curative treatment. This care focuses on providing relief from pain and distressing symptoms, and in reducing the stress experienced by both the patient and family members. Palliative care integrates the psychosocial and spiritual aspects in patient care. The goal is to improve the quality of life for both the patient and the family.

Medical conditions or illnesses that are terminal

Some of the terminal conditions are:

  • Chronic neurological conditions with advanced cognitive and functional impairment, with no prospects for improvement (dementia, Alzheimer's).
  • Old age combined with chronic debilitating illness, which eventually leads to organ dysfunction.
  • Progressive cancer where treatment has failed or patient has refused treatment.
  • Post surgery complications that cannot be treated.
  • End-stage of pulmonary, cardiac, renal or hepatic disease which has been treated medically or surgically
  • Catastrophic illnesses (paralysis, stroke, etc.) with organ dysfunction and which are unresponsive to a reasonable period of treatment.
  • Coma (in the absence of brain death) due to traumatic brain injury, internal bleeding in the brain, etc
  • Any other medical condition with a low probability of survival