This is a true story.
My friend Bala and his wife Chitra were married for over 50 years with one child. During their 51st year of marriage, Bala was diagnosed with lung cancer, which came as a shock to both of them. Bala went to the best doctors to be treated, and to see what his options were in terms of a possible cure. In the beginning, his treatment looked promising. All went well for about a year and a half, until a routine check-up showed more nodules in his lungs. The doctors gently broke the bad news - Bala was on borrowed time, and it was time to put their affairs into order.
Throughout Bala’s life, he was an organised person. In the three weeks between the terminal diagnosis and his death, He prepared for his end of life in a very practical way. He retired as an air force officer, and focused on getting palliative care from a special team of doctors. He sought out ways on how to get relief from the symptoms and stress of the illness, in an effort to improve the remaining quality of life for himself, his retired wife, and the rest of his family.
Despite it being a difficult experience, Chitra says that she felt really involved throughout the whole process. Bala spoke to her and his daughter about what items they would like to keep, and what could be given away. Among the items kept was a handwritten recipe book filled with family recipes passed on from generation to generation. Bala also left handwritten notes detailing what coffin he would like, and left requests and details for his funeral, including a meaningful send-off. Everything was decided as a family, which made Chitra feel involved, and helped her feel more prepared for her husband’s death. Chitra now says that this was the best introduction to end of life planning she could have had. There is something special about recognising that death isn't something that happens at a distance from life, It's very much a part of it.
Palliative care is an essential patient-centred care that provides treatment and symptom relief with the goal of optimizing the quality of life for the patient and their family. This service is provided by a specially trained team of doctors, nurses and other specialists who work together with a patient’s other doctors to provide an extra layer of support.
There is a difference between Palliative and hospice care. Where hospice care is a specialized care offered for comfort nearing the end of one’s life, palliative care can be offered at any time through serious illness, including soon after diagnosis, and even if the illness is chronic but not terminal. There are 5 stages to Palliative care:
Family members and/or loved ones will work with healthcare professionals to create a palliative care plan. At this stage, the patient’s symptoms can be adequately managed by existing treatments, but a plan must be made to maintain symptom management as the patient’s illness progresses. Stage one is also known as the “stable phase.”
The “unstable phase”. At this point, the patient needs intervention from the team of medical professionals. During this stage, the patient may experience new symptom development, or an increase in the severity of existing problems or symptoms. An urgent or drastic change to their palliative care treatment may be required. This is a good time for the family to seek some emotional and spiritual support provided by a healthcare professional.
During stage three, the patient experiences gradually worsening symptoms, and new and unexpected symptoms or medical problems arise. This stage is known as the “deteriorating phase.” During this stage, it is common for the family to feel greater stress and may need more counselling.
Stage four involves arranging inpatient care at a hospital, or at home. End-of-life care is usually arranged for during stage four. During this stage, the patient is usually bed-bound, experiences difficulty swallowing medication, is disoriented, disinterested in food or drink, and requires daily health interventions.
Stage five occurs after the death of the patient. During this stage, also known as the “bereaved phase,” family members and loved ones may be provided with a planned bereavement plan, which can extend for many months.
Palliative Care is here to support patients, maximize their quality of life, and ensure they are living - not just being kept alive. Palliative Care serves to take care of more than just one aspect of a patient, but to focus on the person as a whole.