There are different ways people die. The first is the sudden death. The other is the long death, which is what most of us will likely experience. “The reality is death from cancer, where you actually know it’s going to happen, and you can say goodbye”.
It was 18th March 2004, I received a call from my friend. He had lung cancer with hepatic and brain metastasis. Disease had progressed relentlessly despite surgery, radiotherapy and chemotherapy. He was alert and said “I want to talk to you privately in other room. There was pin drop silence in the house. We went to the other room and he broke his silence. “Ajay. I know I have little time, may be few hours or few days. I am ready to go now. I have finished all my household agenda, my property matters, my will and even my professional commitments. My family is with me, my loving daughters, my wife, my brother and even my parents. I don’t want to be tied to wires and tube and ventilator. Infact I want to go to heavens from home. No more hospital please, convince my family. After some sobs and silence, we came out of the room as if nothing happened. I counselled the family and prepared them for the end. Next day morning he took tea at 6:30AM and said “I want to see my parents, my family.” Everyone huddled in small room and he didn’t take much time to leave peacefully. This was “healthy dying.” Healthy dying means when one is “well-“prepared for, it’s expected, and other people know about it.”
NODA (No one Dies Alone) a non-profit volunteer organization says “no one is born alone, and no one should die alone, Death should be “Peaceful” which seems like an indispensable criterion for the best death. The best way to die is being ready, like being physically, emotionally, spiritually ready to go.”
The philosophers have developed a set of five standards for the ideal death:
Conventional medical care settings have led to ‘bad’ deaths, typified by excessive use of technology, patient and family wishes ignored, lack of patient knowledge and autonomy in decision-making, the patient gets reduced to a pathological system, and the quality of life gets devalued. Hospitalized patients stay in pain without their wishes known, and in isolation.
In 2008, Hales reviewed 17 studies defining quality of life at the end of life. Seven common broad domains were found to be important: physical experience, psychological experience, social experience, spiritual or existential experience, the nature of medical care, life closure and death preparation, and circumstances of death. Expectedly, pain and symptom management were the most common issues. Attention to emotional or psychological and social well-being are also crucial.
In early 2000’s some studies reported that patients with advanced serious illness want to know about future course of their illness so as to put personal affairs in order to make financial arrangements and personal business; to not be a burden to family, to prepare their families for the future; and for some, to plan one’s own funeral. These studies show that preparation is not limited to patients; families also need to be prepared for what to expect about the course of illness and decision-making. Another less expected domain is the nature of health care. This domain focuses on issues such as appropriateness of level of technological intervention as well as communication with health-care providers. Attributes of life completion include coming to peace, resolving conflicts, contributing to others, spending time with family and friends, and saying good-bye.
‘Good dying’, is distinct from “good death”. For example, immediately after a diagnosis of metastatic disease, preparation may include discussion of possible course of treatment, the combination of curative and palliative therapies and helping patients remain integrated with normal work and social roles. As illness progresses, preparation may include discussion of decreasing the use of curative therapies and increasing palliative approaches and discussion of hospice. As dying becomes imminent, preparation may involve working with the family about expectations of care, location of care and education regarding the very end of life. Good dying is infact preparation for good death.
Take the following steps to reinforce the concept of dying in a health way. Focus on patient safety and autonomy. “Healthy dying is when patients themselves get to choose the agenda and get to take their own time-as long as they’re not suffering at all. Acknowledge death as a part of life. Reset loved one’s expectations. Prepare family members for what is going to happen. Encourage family members to talk to patients. Ceremonies, prayers and songs can help make this time meaningful too. Loved ones may say goodbye in their own ways.”
At the end of life curative model changes into a care model. Services can be quite brilliant and culturally appropriate. Different views of different faiths and cultures exist on how hard one should strive to keep alive. Jews and Muslims, for instance, tend to argue for doing everything to keep people alive, life itself being seen as the most precious divine gift. Many Christian group are less concerned with length of life than with last rites and final absolution. We need to adopt a new approach to dying striving for a good death. The care of our dying is an indicator that reflects the overall quality of our medical care.
Employing low end technologies and early hospice care will address the terrible symptoms of late stage cancer. The intractable symptoms of cancer in dying need early interventions aimed at preventing or reducing the discomfort and pain of malignancy. This is no simple pursuit of the “good death” but rather a pushing back of the horror of “bad death”.
In palliative care, dying is seen as more than the physical diagnosis and disease. Patients are treated “holistically.” The dying person’s journey ends in death, so we associate the two terms. But dying is not to be conflated with death in one important and crucial way – dying is living. The dying are not the dead. And if the dying are living then they are entitled to aspire to everything that other living people should aspire to quality of life that means good company, good professional care, a right to contribute to society in their preferred way, safety at home and in public spaces. Why should dying be any different!
Director – Surgical Oncology