This is a guest post by Gowri Parameswaran on behalf of her mother Sulochana

“Life changes in the instant, the ordinary instant” wrote Joan Didion in her book The Year of Magical Thinking. Didion wrote about her attempts to cope with her husband’s death and her reference was to the moment of his passing. I had picked up the book in JFK and had completed it by the time I reached Chennai. I needed the sustenance that the book seemed to offer; I was coming to see and take care of my mother (Amma we called her) who had been admitted to the hospital with decompensated lungs for the third time in two months. Her heart was too sluggish to pump her blood through the arteries and the fluid had backed up into her lungs; her lungs were decompensated. I remembered the ominous prognosis that one book on Heart Failure had spelled out about this turn of events in her health – that this was a seminal indication that the heart had reached the end of the road. She seemed so normal when I left her in October. The doctor had pronounced her heart healthy under the circumstances.

“Life changes in the instant,

The ordinary instant”.

I have to admit that Amma’s health condition was not so ordinary. She had been diagnosed with Congestive Heart Failure, CHF for short, in 2001. The heart muscles were not performing to normal capacity and had weakened considerably as a result of years of neglected hypertension and a genetically enlarged heart condition. We thought we had lost her then but her doctors found the right cocktail of medicines to increase the functioning of the heart and get it to where she could lead a relatively active life. Being a professor and a bit of a hypochondriac, I had to immediately learn more about the condition than my mother ever wanted to know. I bought books on heart failure and learned to detect the small signs that indicate an oncoming crisis – edema of the feet, the distended abdomen, the labored breathing, inability to lie flat and the drastic sudden weight gain. Amma was a very reluctant patient even though she was a physician’s daughter and was not very interested in my insights about the disease. Appa, my father plodded on relentlessly trying to keep her alive and healthy. Beneath all of the overt signs of returning health however, her heart was slowly beating inefficiently and inexorably to its collapse. CHF is an irreversible disease and eventually the heart becomes so weak that the patient is rendered bedridden, and under great distress.

The story of the disease must read like a record stuck in its groove. You think there is progress but yet things stay the same or deteriorate in an invisible fashion. The heart, for no perceivable reason stops functioning well all of a sudden and the fluids in the blood vessels get backed up. The water leaks out of the vessels onto any cavity it can find in the body and very soon the lungs get flooded. Without immediate help, the person drowns in her own fluids. Amma was admitted to the hospital several times in the last nine years, her lungs engorged with fluid and gasping for breath. After she had been discharged, she would continue with her busy life amid a tightly knit large extended family. With both her daughters being away in the USA, Amma’s closest bonds were with her sisters.

As I landed in Madras on the 13^th of February, I knew this time it was different. If you knew anything about CHF, it was that there is no escaping its clutch. The repeated hospitalizations of the last two months were not normal. Two or more of these events within 6 months meant that we had reached the end of the line. Even with optimum medical care, my mother could not get out of bed without gasping for air. I had spent the week before leaving New York brushing up on my knowledge about the disease and the options that we had left. In addition to CHF, my mother also had atrial fibrillation, left ventricular dysfunction and some fibroids in her lungs. Ablation and biventricular defibrillators were being increasingly used in the USA to combat the discomfort resulting from the atrial fibrillation and to help shock the heart into action if it stopped. A few phone calls to India convinced us that there were few experts who could perform these operations in India and research in the US offered only mixed results about the usefulness of these procedures in extending life.

It was unusually cool the morning I landed in Chennai. I could barely wait to get to the reputed hospital where Amma was waiting. I found her in great distress, moaning softly and rocking back and forth. She had severe nausea and her head felt numb. She was tired of being shunted back and forth from the hospital and made sure she communicated this to everyone who visited her. The next 24 hours were tough as I sent my father home to rest while I stayed in the hospital. I waited impatiently to find out the truth about her condition from her doctor of nine years. The next day, we waited for the doctor to finish his examination of my mother and hear his pronouncements. Our future course of action would depend on his prognosis.

It was a big disappointment that the doctor failed to really tell me much. He dictated to his assisting nurse that she was in CHF stage 4 but he refused to tell me anything. Having had experience in the USA with more open communication from doctors, I pushed the doctor gently to reveal more. Appa revered the doctor and I would have hated to damage their relationship. After I shed a few tears at my mother’s plight, the doctor relented and said that it was indeed the end and that my mother could last a few weeks to perhaps a few months. I had consulted with friends in the USA who had loved ones pass away with terminal conditions like heart failure. Many of them had extolled the virtues of dying at home, surrounded by family. They had also mentioned the major palliative role that hospice organizations had played during the last days, when both the patient and her relatives are in mental and physical anguish. I was therefore determined that my mother would die at home and not be admitted repeatedly to the hospital as if she was a piece of machinery that needed to be fixed.

When I asked the doctor about the kinds of expert support that we might receive at home, he looked at me in puzzlement. Clearly, no one had asked him this before. He said that all we can do is to bring her in if she experiences a crisis. I looked at my mother and she was in crisis at that moment. She was extremely uncomfortable and I knew that in a couple of days we would have to be back here at the hospital, perhaps with severe decompensated lungs again. It had cost us a couple of lakh of rupees over the last two months of hospitalization, and every time we brought her in, the bill would run into several tens of thousands of rupees. We could manage this of course because my father had partial reimbursements from his company where he had worked all his life and my sister and I were earning in dollars. However, I could not but think of what a prognosis like this one might mean for an ordinary middle class Indian family. I knew of families of friends who had to mortgage jewelry and homes in order to pay for health care.

I pointed out to the doctor that my mother was in discomfort at the moment and wondered if there was palliative treatment available that we could take home with us. She had severe nausea, a persistent ache in her extremities and numbness in the head because of a lack of supply of oxygen. She could not lie down because of fluid build up in the body and in her lungs. She felt a constant tightness in her chest as her heart muscles slowly were losing their power and were grinding to their death. She suffered from frequent attacks of anxiety and depression because of insomnia, fear of drowning in her own fluids and the realization of her impending death. In the west, morphine and psychotropic drugs have been used very effectively to dilate the blood vessels, reduce the pain and chest tightness and bring about calm in the patient. Patients are sent home with an IV channel where diuretics can be administered hourly to reduce fluid build up in the body.

My mother’s doctor refused to do either since morphine is highly regulated in India. He also was reluctant to allow the administration of Lasix, the diuretic of choice at home. I hated to bring to the attention of the doctor the situation in the USA, because that is the one thing that gets Indian doctors angry and on the defensive. I decided and managed to convince my father at that point that we were going to do our best to keep my mother away from the hospital; don’t get me wrong, I was extremely grateful to the doctor, but the rules of the Indian medical establishment are to ensure the best possible and by implication, life-extending care for patients who can pay – until the very end. In the USA, the constraints are in the opposite direction; every hospitalization has to be justified to private health insurance companies and the government is constantly being asked to spend less on Medicare, the social program that ensures access to health care for all older adults.

We hired round-the-clock nurses who could administer IV medicines, consulted with some hospice physicians we knew in the USA and with physicians who were relatives and made sure my mother never had to be admitted to the hospital. We were chided by relatives who were not quite ready to accept her death as impending and argued for life-prolonging care, even though it might mean more discomfort and hospitalizations for her. Everybody is sustained by stories of miracles in a place like India. A medical community that is death-affirming and that takes end-of-life care as seriously as life-prolonging care would have helped everyone in family come to terms with her condition. Unfortunately, we had to make vital decision regarding her care on our own. I have to reiterate here to the readers that hospice and palliative care is not about giving up on somebody but to recognize the vital realities of terminal illnesses and allow the patient control over his final moments, at the same time working with family members to help them understand the patient’s condition and come to terms with what may not be under their control. Ultimately, it is about valuing the process of dying as much as the dignity of living.

The term hospice is derived from the medieval practice of wayside shelters to provide respite for weary travelers. The first modern hospice centers for end-stage patients were established around London in the 1960s. In the 1970s, the US Congress held a series of hearings about the need for palliative care where Elizabeth Kubler-Ross who had done foundational work in identifying the many stages of dying, pleaded with legislators to allow for more choice for the dying to take part in any decision that involves their final days. She chided modern society for its death-denying practices. Traditionally cultures the world over had special rituals that involved the dying and that affirmed their continued ties to the community and the family. In India, often keeping a watch over the dying, relieving their thirst and reciting religious hymns were part of these death-affirming practices. Modern medical and therapeutic techniques can now support these traditional community affirming practices by making the process less emotionally and physically painful.

In the 1980s legislative action made it possible to establish hospice centers all over the USA and both state and central governments provided for special funds to allow Medicare patients who are older adults to enable them to make important choices about their last days. Today, palliative care and end-stage disease managements are specialized disciplines within medical practice and taken very seriously by medical associations. The patient and her family members can begin a conversation about hospice at almost any time during a life limiting illness. The ultimate decision is always left to the patient, who can opt in and out of care at any time. The level and kind of care provided by hospice depends on the number of caregivers available as well as the patient’s own requests.

Here is actually how hospice works: The patient and the family, often in consultation with their doctor apply for help from hospice. A group of experts that includes doctors, clinicians, psychologists and other personnel involved with the care of the patient make a determination that the they have done all they can to prolong the life the patient. Perhaps the largest groups of patients who qualify for hospice are people with heart failure, followed by patients with terminal cancer. With CHF, the experts look at several key indices before talking to the patient’s family. Some of these include: the frequency of lung decompensation incidents even after providing for optimal care of the patient in a health setting; an inability to carry on even the most basic activities without feeling extremely fatigued; the symptoms of heart failure being present even at rest. At this point in the disease progression there is no hope of improvement without a heart transplant. Many patients are not strong enough to survive a transplant.

Through the entire decision making process, everyone keeps in mind the fact that hospitals are impersonal, often cold settings and patients would rather stay home than be admitted to the hospital over and over again. The expert decision makers also take the mental health of the caregivers into consideration and part of hospice care is about helping the loved ones accept the imminent departure of the patient and the coping that needs to ensue thereafter. Hospice neither enables death nor does it postpone death. The hospice team simply allows the patient to exert more control in the dying process, while relieving them of the most agonizing aspects of the disease through appropriate medications and equipment. In traditional life-prolonging care, physicians may not be able to use these medicines because of the legality of their use or the impact of these medicines on other parts of the body. An even bigger aspect of the hospice responsibility is to make the loved ones around the patient aware of the process of dying, allowing them to care for the dying in a more effective and compassionate manner. Just from reading the hospice documents that I had brought with me, I was able to gain a full appreciation of what was happening to my mother’s body and mind as it shut down. I was able to understand her delirious ramblings and not panic at her discomfort.

The use of interventions for dying patients is among the most sensitive discussions that hospice regularly deals with in terms of patients and their families. Ventilators, intravenous fluids and cardio-pulmonary resuscitation techniques are vital to prolonging the life of someone who is not at the end-stage yet. However, it is extremely uncomfortable for someone who is dying and may be counterproductive to the quality of life during his or her last days. Ventilators significantly increase the need for sedation of the patients and interfere with the person’s ability to communicate and swallow. They force the patient to be admitted to the hospital even when they would rather be at home. Intravenous fluids may cause great discomfort to end stage patients who refuses food and water. When the heart fails, the dying may not want to be resuscitated because of the poor quality of life. Hospice experts attempt to give a thorough understanding of what these interventions do to the dying so that family members can make informed decisions about available treatments.

My mother had expressed anguish at perhaps having to be bedridden for a prolonged indeterminate period of time. In her agony, she would repeatedly ask for poison to be administered to her so her end would come quickly. She had always been very active outside of the home engaging in activities with her sisters and her current condition was nothing short of a nightmare. She had always hated hospitals and doctors and having to watch one’s health, and she pleaded with us not to have to go through hospital admissions again.

Amma’s agony did not last long. Five weeks after she was discharged, she took her last breath – on the 22^nd of March at 7:25 AM. We had resisted enormous pressure to take her to the hospital when she had stopped eating a week before and only taking minimal amounts of fluids. Those last weeks without food and eventually fluids changed Amma’s feelings of physical comfort dramatically. The edema in her legs and the excess fluid in her abdomen (ascitus) drained away, allowing her to lie down flat for the first time in months. Her head did not hurt all the time and her nausea subsided. She began to resemble the person we once knew. On the morning of her passing she waited for us to wake up. From the hospice documents we recognized her rasping full-mouthed breath as signaling the end and had time to call the people she was most intimate with. We sat around her whispering prayers, holding her hand and kissing her, crying and feeding her milk and water as her breaths came further and further apart and finally came to a standstill. This is a scenario that is rare in middle class Indian homes today as people are rushing their loved ones in a panic to the hospital, feeling compelled to resuscitate them if it were possible, even when the loved one would rather die.

On a bigger scale, it also raises questions about what good health care means in an unequal society. In India, the government devotes so little to public health and hygiene, whether preventative or palliative. Those who can afford it and those who can barely afford it have access to good care but at a steep emotional and financial price. Families that are are too poor to afford decent health services have to make hard choices with little professional help. From the many families that came to visit Amma and the nurses who took care of her, I heard stories – terrible ones. I was told that if families could afford to pay, hospital kept patients who had died in intensive care to increase profit. The nurses told me about special people that one could go to in government hospitals that could help bring about an early death when poor families could not afford to keep the terminal patient alive. I hoped that these were just rumors. While there is a big debate going on about the importance of allowing euthanasia in India, there is a lot less conversation about making sure people have access to established palliative care. It would allow families to have more control over the care of their loved ones, without bankrupting them.

For me, the personal is always political and my article is an attempt to make meaning of my mothers passing, within a larger social context. She died an ordinary death and my piece is a flawed gift to my departed mother. It is my clumsy attempt to make sense of her all too early and painful death. Like our relationship, it is incomplete, too emotional, and is filled with complaints. Ultimately it is a plea to the medical community in India to recognize that it is as important to be able to die with dignity, as it is to live as long as is possible. In a culture that professes to accept death as much it does life, it is important that the medical community understands and supports ‘end-of-life’ care so both the dying and the loved ones of dying persons feel nurtured. I would like to send out a call to action to the medical organizations in India to take the leadership in the area of patient rights and establishing palliative care as one way to lift the dreadful burden that poor health and the associated health care needs place on the family of the dying.

[Gowri Parameswaran is a professor of education at the State University of New York at New Paltz. I write about the impact of gender and culture on issues related to education.]