Terminal Illness and Palliative Care

Dr Asha Sapre

As I begin to write this blog I remember a conversation that I had with a young patient Sangeeta, a stay-at-home Mom with 3 kids who was diagnosed with stage IV breast cancer. She had uncomplainingly undergone a plethora of investigations and treatments, but the cancer progressed and we were running out of curative therapies to offer. She recognized that the options that had been suggested were more in the hope of a cure rather than an actual cure. She put her hand up and said ” Instead of attempting treatments that are most likely to be unsuccessful and use up precious time, I would rather spend that time at home with my family

There was a feeling in me that rebelled against this thought as it implied that we had failed in curing her and were now giving up.

But was this a failure of medicine or the right decision in this case?

For more insights read further

Sangeeta was told she is terminally ill, what does that mean?

Terminal Illness is a stage when a disease cannot be cured or adequately treated, and it is reasonably expected to result in death of the patient over a period of time.

Who becomes terminally ill?

Terminal illness is not limited to cancer as is perceived by most on basis of popular perceptions in books and movies (Remember ” Fault in our stars ,” Anand”).

It could be diagnosed in

• 45-year-old male who has colon cancer with metastasis unresponsive to treatment
• In an 85-year-old male who has suffered from a severe heart attack and the extent of damage to the heart is so extreme that he is breathless even at rest and is restricted to bed
• In a 60-year-old male with severe stroke which has left him paralyzed, comatose with complications like pneumonia for which he needs ventilatory support and is alive only due to aggressive medical support been provided.
• Or a 40-year-old paralyzed from neck down (quadriplegic) due to spinal injury after a road traffic accident, who develops multiorgan failure due to infection

When and why is a discussion on terminal illness required between doctor and patient?
The diagnosis of terminal illness or the expectation that the disease is likely to progress to terminal illness in the near future needs to result in an early dialogue between the patient and the doctor Atul Gawande in this book ” Being Mortal : Medicine and what matters in the end ” describes the dilemma about the decisions made by the doctors and the patient while deciding treatment in such cases

“The pressure remains all in one direction, toward doing more, because the only mistake clinicians seem to fear is doing too little. Most have no appreciation that equally terrible mistakes are possible in the other direction—that doing too much could be no less devastating to a person’s life.”

There is often a disconnect between doctors need to do something to treat and the benefit that the patient may receive from those interventions.

The doctor needs to explain to the patient how the disease is likely to progress, what would be the common problems encountered , understand the patient’s wishes on the treatment plan and establish realistic goals of therapy.

Thus care goals change from being disease-focused and aimed at a cure to being person-focused and comfort-oriented. The concept of palliative care would at this time be explained to the patient and the caregiver.

What is palliative care ?

World Health Organization states, “All people have a right to receive high-quality care during serious illness and to a dignified death, free of overwhelming pain and in line with their spiritual and religious beliefs

Palliative care improves the quality of life of patients and that of their families who are facing challenges (physical, psychological or social) associated with life-threatening illness.

It is specialized medical care that focuses on providing patients relief from pain and other symptoms of a serious illness, no matter the diagnosis or stage of disease. This form of care is also given along with curative or other treatments.

Palliative care is patient centric. It identifies what is the most important priority for the patient and develops a strategy to meet these goals aimed at improving quality of life and create a feeling of well being
What this ” wellbeing entails will be different for different individuals.

For Sangeeta one of the treatment goals identified was to reduce pain so that she would be able to do most activities of selfcare herself or just read a book or enjoy a good conversation without the pain meds causing significant drowsiness or other side effects.

For another person the goal could be a need to stay independent and do all daily activities – for this various equipments may be required e.g change in bed height for easy transfer to the wheel chair or having a nurse aid available to help with these activities .

Palliative care uses a team approach to support patients and their caregivers. It involves a range of professionals including physicians, nursing staff, paramedics, dieticians , physiotherapists
psychiatrists and rehabilitation specialists and many more depending on the spectrum of care required.

Types of palliative care in terminally ill patients

Hospice or home palliative care will provides a dignified alternative of spending last months at home with family rather than in an impersonal clinical setup .

Home palliative care is aimed at providing professional support to help the family member who is a primary caregiver.

The process of setting up care at home includes

• Identify the patients care needs and come up with an individualized plan which fits the personal values and goals of treatment
• Symptom management (For pain , breathlessness ,anxiety ,etc ) ,support and advise to the family caregivers on the same
• Coordinate with the treating specialist to understand the patient’s condition and ensure communication with the doctor as required
• Seamlessly Identify and provide resources including personnel and equipment. This may differ from ICU level care to just providing nursing care to a bed ridden patient

A good service care provider will be

• Proactive and flexible to provide care as Terminal illness is an ever changing condition
• Has a Holistic approach to treatment with patient’s wellbeing been the primary focus
• Has a systematic process or SOPs in place to take care of personnel and medical emergencies
• Has supervision of the patient care on a regular basis
• Discusses monetary aspects with clarity to avoid friction at a later date.
• Provides addons like respite care for family members, transportation etc

Awareness and early implementation of terminal care at home will help the patient , reduce expenses and avoid unnecessary interventions .

The inevitability of Terminal illness cannot be changed but what can change is the chance to create a better ending to the life of a loved one.