The death of Aruna Shanbaug has once again highlighted our inability to guarantee a satisfactory and dignified end to human life. The spectre of euthanasia which has raised its ugly head in the West and is beginning to do so here is a reflection of this. From the 1960s onwards, Dame Cecily Saunders, Dr Balfour Mount, and Dr Franco Pannuti, among others, initiated path breaking initiatives in the UK, Canada and Europe respectively to address the unrelieved suffering of the dying. While Dame Cecily laid emphasis on a hospice programme, Dr Mount talked about “palliative medicine” in a hospital setting and Dr Pannuti coined the term “eubiosia” (“a good life”) and started a hospital-at-home programme in Bologna, Italy. Despite this diversity their intentions coalesced and were unambiguous: to uphold the dignity of life of the terminally ill person right till the end and to give a proper closure to the family. To those of us in India who have subsequently chosen to take on the responsibility of delivering palliative care to those with a terminal illness or a life limiting condition, as we have at CanSupport, it is clear that it cannot be left to our current health care system  [ Read More ]

Understanding the Needs of Caregivers

Caregivers’ needs are often not addressed adequately when it comes to long term debilitating illnesses. It is somehow taken for granted that they will cope. An expectation that is patently unfair. Which is why when we visit patients in their homes we often see family members who are exhausted both physically and emotionally. The main caregivers in most families are women. This is an additional responsibility besides the roles they continue to play as mothers and wives. The children must be sent to school, meals made on time and household tasks managed. In Indian households the primary caregivers are usually the wife or the daughter-in-law. Which is why when it is a female member who is sick, the lament from the man is, “who will look after me now?” There is a great argument to be made for respite care so that caregivers can get a break from the tyranny of a nursing schedule that keeps them tied to the bedside of the patient. There is a great risk that if this is not done it will negatively impact the health of those giving care as they begin to slip into depression. It is a phenomenon known as burn out  [ Read More ]

Cancer is the Best Way to Die

Recently a medical doctor in the UK kicked up a storm by declaring that he was rather pleased that he had turned his back on further aggressive treatments for his cancer. Instead, he had decided that death by cancer wasn’t so bad after all as it gave him the time he needed to put his affairs in order. He was also confident that palliative care would ensure that he continued to enjoy a good quality of life, unlike the second-line and third-line treatments he was being offered. Such an admission was remarkable on several counts. First, it came from a noted medical professional (an erstwhile editor of the British Medical Journal). Second, it highlighted the torturous nature of pharmaceutical treatments on which millions are spent by health systems and individuals worldwide with limited results. Third, his belief that preparing for death is far preferable than meeting it unexpectedly and suddenly. And lastly, his willingness to accept the reality that confronted him – his impending death. Today, we live in a society that sees death as the enemy and consequently denies it. Many people are still not told that they have cancer. When our teams enter homes it is often with  [ Read More ]

The topic of meaningful life as you reach old age has caught the public’s attention thanks to a very readable book, ‘Being Mortal’, recently written by Dr. Atul Gawande, who resides in the USA. His thesis is by no means original or rocket science but bears repetition in today’s world where death is regarded as a failure or at best an unwelcome intrusion. As he points out, nowhere is this more evident than in the medical world. The work we do at CanSupport with cancer patients and their families reminds us of this every day. Patients and families complain that despite receiving treatments from oncologists in well regarded institutions, some times over a number of years, they have never felt cared for. On further probing we find that what they mean is that no one bothered to ask them what mattered to them and what they hoped their treatments would achieve. As we know, we are the sum of our parts. Unfortunately, the specialist is only concerned with a small part of the sum. How the malignant tumour is reacting rather than how you are reacting is the main concern. This would be fine if we as people did not  [ Read More ]

Recently a young 29 year old woman living in the US, Brittany Maynard, took her life in the State of Oregon as she did not want to have to face the ignominy of a terminal and malignant brain tumour which would have steadily robbed her of her ability to function as a normal person. Her plight caught the imagination of millions around the globe who hailed her as a hero. On the other side there were those who berated her for her decision based either on religious conviction or a belief that it is possible to die with dignity. As someone involved in palliative care I find myself conflicted. While we are able to offer relief and comfort and restore a sense of well being to many who are facing a terminal cancer diagnosis I also recognize the fact that the perception of suffering differs from person to person. Moreover, if the emphasis is now on quality of life rather than the length of life at which point does the quest for this quality become a reasonable argument for the termination of life? Is it at the point when we suffer functional loss or begin to lose our mental capabilities  [ Read More ]

Working as a Team

I believe half our problems in life would disappear if we worked as a team. It is no different when it comes to looking after patients who need palliative care and their loved ones. As one of our doctor’s on the home care team remarked the other day, “A happy team ensures a happy patient”. To no small extent this is because if the team is in sync and communicating well among themselves, patients and members of their family will get the same message rather than conflicting messages that further confuse them. It is interesting to note that one of the major stressors for nurses is having to deal with the questions of a patient who is very sick not knowing what has been said by the doctor. The advantage of a home-based team approach is that usually these conversations take place in patients’ homes and that the nurse and counselor are privy to what the doctor has to say. They can then take on from where the doctor left off to reinforce what has been said, or to spell out what has been left unsaid. The other debatable point is whether it is the responsibility of the doctor alone  [ Read More ]

Taking Your Life Versus Dying With Dignity

It is dismaying that in the developed world in the name of dying with dignity there is mounting pressure from a certain section of the public that laws be changed to allow a person with a debilitating and life limiting condition or illness to take his or her own life or for a doctor to do so without fear of reprisal from the State. The argument is usually built on the grounds that this is a matter of personal choice and autonomy that should be respected. In India, on the other hand, more often than not people ask that they be allowed to take their lives primarily because of the suffering engendered by poverty and lack of affordable health care. What both requests have in common is fear of an uncertain future in which one will be unable to function with any kind of dignity. Most governments around the world have resisted such requests, but recent decisions taken by two state legislatures in the US, in the states of Montana and Massachusetts, point to the readiness of legislators to address this issue head on and take a vote on it. It seems assisting the dying to take their lives is  [ Read More ]

Substitute Decision Making at the End of Life

It is often the case that cancer patients with advanced and terminal disease are unable to communicate their last wishes or take decisions regarding their care as their health status declines and they approach the end of life. These decisions and the way forward will now have to be laid out by substitute decision makers who are usually close members of the family or members of the treating team. Unless everyone is able to reach a common understanding as to what now needs to be done going forward the potential for conflict is very real and this will certainly impact the way the patient dies. There is therefore a case to be made for care providers and caregivers to invest time and effort in talking to one another so that they can find common ground. All too often there is a communication gap that exists not least because members of the family are unable or unwilling to accept that their loved one is dying while on the other hand doctors too may find it difficult to admit that the patient is dying as death is often equated with personal failure. The one who suffers consequently is the patient as s/he  [ Read More ]

Health Insurance Coverage for the Times

Health insurance is a vexing thing. If you don’t have it, you face the risk of spending huge amounts out of your own pocket to meet any medical contingency, while if you have it, you are never quite sure if those treating you are responding more by your symptoms than to the medical coverage you have. This again is the result of a system that does not offer universal health coverage to its citizens across the board and where a growing number of health providers today are private players. There is also much to be said for adapting health insurance schemes to meet the challenge of a changing health landscape. For those of us who work in palliative care, the need is for medical coverage schemes that reimburse those with life limiting diseases and conditions. The increase in the life span of Indians is already seeing a commensurate rise in the incidence of non-communicable diseases like heart disease, diabetes and cancer as well as debilitating conditions associated with old age such as osteoporosis, Alzheimer’s and dementia. As we live longer and longer it is these conditions that are going to dictate the quality of our final days. The evidence available  [ Read More ]

In the recent past, palliative care leaders have been working alongside well wishers in the Ministry of Health & Family Welfare to evolve a policy for palliative care in India. They have come out with a commendable framework and with further inputs from those delivering palliative care around the country and the support of the World Health Organization in Delhi an implementation strategy is ready to be rolled out. I, too, was involved in this exercise and for me and my colleagues the challenge was to suggest the way forward for bringing palliative care into private health care institutions. The challenge exists at several levels and is based on a number of assumptions. First and foremost is the assumption that for private players making profit is the prime motive. Palliative care keeps people out of expensive ICU units and also discourages expensive diagnostic tests and treatment interventions that are unlikely to benefit the patient; ergo palliative care represents a conflict of interest. The second assumption, not disconnected from the first, is that unless private and state insurance companies are ready to bear the cost of hospitalization for palliative care, private hospitals will continue to opt for more invasive, albeit unnecessary,  [ Read More ]


www.cansupport.org

To Live Until You Di

The death of Aruna Shanbaug has once again highlighted our ...

Understanding the Ne

Caregivers’ needs are often not addressed adequately when it comes ...

Cancer is the Best W

Recently a medical doctor in the UK kicked up a ...

To Live Before You D

The topic of meaningful life as you reach old age ...

Hope is Eternal

Recently a young 29 year old woman living in the ...

To Live Until You Di

The death of Aruna Shanbaug has once again highlighted our ...

Understanding the Ne

Caregivers’ needs are often not addressed adequately when it comes ...

Cancer is the Best W

Recently a medical doctor in the UK kicked up a ...

To Live Before You D

The topic of meaningful life as you reach old age ...

Hope is Eternal

Recently a young 29 year old woman living in the ...