|Year : 2018 | Volume
| Issue : 3 | Page : 207-209
After the supreme court judgment on autonomy: What the oncologist needs to know
Roop Gursahani1, Sri Nagesh Simha2, Raj K Mani3
1 Department of Neurology, P.D. Hinduja National Hospital, Mumbai, Maharashtra, India
2 Department of Palliative Medicine, Karunashraya, Bengaluru, Karnataka, India
3 Department of Critical Care and Pulmonology, Batra Hospital and Medical Research Centre, 1 Tughlakabad Institutional Area, M.B. Road, New Delhi, India
|Date of Web Publication||28-Jan-2019|
Dr. Roop Gursahani
Department of Neurology, P.D. Hinduja National Hospital, Mumbai, Maharashtra
Source of Support: None, Conflict of Interest: None
|How to cite this article:|
Gursahani R, Simha SN, Mani RK. After the supreme court judgment on autonomy: What the oncologist needs to know. Indian J Cancer 2018;55:207-9
India does not have any comprehensive legislation covering end of life issues. For instance, in contrast to the western world, we have no laws on living wills (LW) or brain death. In USA, LW were legislated into existence in various states from the early 1980s. At about the same time, the US Uniform Declaration of Death Act put brain and circulatory death on an equivalent status. In India, LW had no legal sanction till recently. Brain death is explicitly recognized only for organ transplant and many doctors believe it is illegal to withdraw a brain-dead patient from the ventilator support if organ donation is not planned or possible. In 2015, the three Indian National Associations of neurologists, intensivists, and palliative care (PC) came together to try and remedy this situation by forming an interdisciplinary taskforce. The current authors are members of the steering committee of that body. A draft model legislation has been prepared and submitted to the government. During the discussion on this document, it became clear that a major obstacle was the fact that there was no legal recognition of autonomy of individual choice for health matters. Thus patient autonomy and the ability to exercise it by the “LW” were the crux of our proposed End-of-Life Care (EOLC) Act. We had hoped this issue would be discussed and debated in the Parliament, but that is still for the future. In the meantime, on 9 March 2018, a five judge bench of the Supreme Court of India confirmed Indian citizens' rights to autonomy and LW by ruling on a writ petition to which one of us (Raj K. Mani) was a party. But the judges went beyond just the constitutional aspects and actually prescribed a process for making LW and foregoing life-supporting treatment (LST). Unfortunately, the procedure that they prescribed is quite impractical , and unusable. So this issue will still need to be sorted out either by the courts or by the legislation. We believe this process will take off in the next few years, almost four decades after the west. This is ironic, because we smoothly manage to import and use hard technological advances within a few years after their invention elsewhere. Medical practitioners in India will need to be aware of how EOLC law works in their own specialty and the discussion below pertains specifically to oncology. Regardless of specialty, it also requires a simultaneous commitment to the modern concept of patient autonomy and the traditional role of the physician as a healer. These may seem contradictory but are actually complementary. Putting these together requires a change in culture and mindset and it is only in the newish field of palliative medicine that we see this actually happening.
Malignancy accounts for 5.7% of deaths in India. Prognosticating is simpler for cancer than for other diseases, because once it enters the terminal stage, the final trajectory to death is fairly straight. Survival can be predicted either as an expected time to death or as a probability of living for a certain duration. Many clinicians use subjective judgment to make a clinical prediction of survival (CPS). This is largely based on tumor indices since it is believed that biologic tumor burden is the main, if not the only determinant. When studied, this approach has been found to be of limited accuracy with a bias toward optimism and over-estimation of survival. Not surprisingly, CPS improves with experience but tends to deteriorate with a closer patient–physician relationship. One way of improving accuracy of CPS is by asking practitioners to answer intuitively, what has been called the “surprise question”: “Would I be surprised if XYZ died in the next 6 or 12 months?”. The 1-year question has been shown to be feasible and to provide fairly reliable results in both cancer and non-oncologic PC. The other method of prediction is actuarial, using mathematical and statistical methods to predict the risk of mortality. It has been shown to be significantly more often accurate than CPS. In addition to tumor features such as type, location, and stage it also includes the patient's prior functional or performance status, symptom burden, and co-morbidities. The impact of these parameters is usually not apparent without systematic assessment. Other predictive factors are mood, the presence or absence of clinical depression, and global self-rated health. Various studies have looked at biomarkers such as C-reactive protein (CRP) and serum albumin. Some or most of these variables can be combined into models that have been validated in advanced or terminal cancer, usually in hospices. There is, however, no generalizable model which can be used across the board through the course of the disease. For instance, this is really needed for patients who may be referred to PC after failure of initial or even second-line chemotherapy, but who are still ambulatory and independent as regards activities of daily living. And this lack of predictability about mortality is part of a much larger blind spot in oncology! Survival is only part of the information sought by the patient and family. They also wish to know about future disability and potential discomfort. With treatment, they need to know chances of disease progression or recurrence as well as drug or radiation toxicity. In our setting where most healthcare is self-financed they need to know about the costs of treatment. Dying with a malignancy has been documented to be the most expensive form of death in India and is often financially catastrophic for the surviving family. Together these have been termed the 5 Ds of prognosis (death, disease progression/recurrence, disability/discomfort, drug toxicity, dollars/costs of treatment). Building a therapeutic relationship with the patient and family needs a commitment to eliciting, analyzing, and sharing this information transparently, but with sensitivity. But it is not just the patient and family who needs this information. As clinicians, this information is critical for sensible decision making about treatment choices and hence the importance of developing one's clinical skills in prognosis.
Before the 20th century, therapeutics was stunted or non-existent and physicians' main skills were diagnosis and prognosis. As our therapeutic armamentarium grew, the importance of prognosis declined, especially in acute illness. Today prognosis is rarely taught, is added as an afterthought in our textbooks and has little weight in clinical research. Prognosis has two elements: foreseeing and foretelling and both go hand in hand. There is no doubt that “foreseeing” which is our internal estimate of a patient's prognosis will not develop unless there is a commitment to “foretelling” which is an outward communication of that estimate, especially to the patient. Many clinicians find both components of this whole process both intellectually and emotionally taxing and routinely avoid it. In part this is because as Christakis  puts it: “patients do expect physicians to prognosticate in a fashion that is simultaneously - and impossibly - honest, accurate and optimistic.” Since all three are not always possible we know we can end up looking foolish or arrogant or both! But physicians also often believe, with scant evidence, that their own positivity can improve their patient's survival. This belief that one's thoughts can influence the external world is called magical thinking in psychology. The outcome of all the above is the “ritualization of optimism”! In his seminal paper, Christakis argues that across the world, physicians have been “socialized” to avoid prognostication and that we do have a moral responsibility to prognosticate. He avers that although a wrongly poor prognosis may occasionally lead to withholding effective treatment, far too often the problem is the reverse where excessive treatments lead to a poor quality of death.
In 2010, the Economist newspaper of UK together with the Lien Foundation of Singapore, propounded the Quality of Death Index. India was at the bottom of the list of 40 large countries. When this survey was expanded in 2015, they did find about a dozen states worse than us! India scores poorly on public awareness of EOLC issues and death is a taboo topic. Morphine and opioids are not easily available because of legal worries about possible misuse, even though the World Health Organization (WHO) validated systems make it possible to deliver these to whoever genuinely needs them. Indian healthcare professionals are not trained to respond to EOLC needs or to provide basic PC. So what is a good death? Multiple themes emerge from the literature and the main three are considered here.,, The first component of a good death is to be pain free. This can be extended to mean impeccable control of the myriad symptoms of dying through PC. PC is best provided by a team of trained professionals, often consisting of or supported by volunteers. These services are not expensive, save costs all around but require to be nurtured and supported by the healthcare system. The next major component is to be able to express preferences for the dying process, i.e. have control over one's last days. Surveys worldwide make it clear that a very few people would choose to die in hospital intensive care units (ICUs) and would prefer instead to end their last days in the midst of loved ones. This would often mean withholding or withdrawing life sustaining treatments at the end of life. This requires prior instructions by a LW since one may not be conscious or capable of communicating coherently at that stage. The LW is usually combined with the appointment of a surrogate decision maker since discretionary decision making is often required and this complete instrument is termed as Advanced Medical Directive (AMD). Another major theme is emotional well-being. This requires a sense of life completion where a life review allows goodbyes to be said and forgiveness to be given and asked. Emotional closure seems to be crucial for a peaceful passing. It is obvious that most of this is not possible without a knowledge of one's prognosis. Too often we are instructed by families to collude in hiding this information from the patient. Some patients may genuinely not want to know but this is the patient's own choice and it is our duty to safeguard their autonomy as far as possible.
For oncologists, the way forward is to build a therapeutic alliance with PC and to incorporate it into management protocols. There is in fact a case for the oncologist as the primary PC provider. When done systematically, earlier in the course of the disease it substantially improves patient and family satisfaction and can actually improve survival. This culminates in a personal commitment that affirms that care is still part of our dharma when cure is no longer possible.
| » References|| |
Sabatino CP. The evolution of health care advance planning law and policy. Milbank Q 2010;88:211-39.
Gursahani R, Mani RK. India: Not a country to die in. Indian J Med Ethics 2016;13:30-5.
Indian Society of Critical Care Medicine: Statement on Implementation of Supreme Court Judgment on Advance Medical Directives and Withdrawal/Withholding of Life Sustaining Treatment. Available from: https://isccm.org/pdf/WDWH_statement.pdf
Cassell EJ. The Nature of Clinical Medicine: The Return of the Clinician. OUP New York; 2015.
Lunney JR, Lynn J, Hogan C. Profiles of older medicare decedents. J Am Geriatric Soc 2002;50:1108-12.
Glare P, Sinclair C, Stone P, Clayton J. Predicting survival in patients with advanced disease. In: Cherny, et al
., editors. Oxford Textbook of Palliative Medicine. 5th
ed. Oxford Univ Press; 2015. p. 66-76.
Glare P, Virik K, Jones M, Hudson M, Eychmuller S, Simes J, et al
. A systematic review of physicians' survival predictions in terminally ill cancer patients. BMJ 2003;327:195-8.
Downar J, Goldman R, Pinto R, Englesakis M, Adhikari N. The “surprise question” for predicting death in seriously ill patients: A systematic review and meta-analysis. CMAJ 2017;189:E484-93.
Simmons C, McMillan D, McWilliams K, Sande TA, Fearon K, Tuck S, et al
. Prognostic tools in patients with advanced cancer: A systematic review. J Pain Symptom Manage 2017;53:962-70.
Das S, Ladusingh L. Why is the inpatient cost of dying increasing in India? PLoS One 2018;13:e0203454.
Christakis N. Prognostication and bioethics. Daedalus 1999;128:197-214.
Clayton J, Hancock K, Butow P, Tattersall M, Currow D, Aust and NZ Expert Advisory Group, et al
. Clinical practice guidelines for communicating prognosis and end-of-life issues with adults in the advanced stages of a life-limiting illness and their carers. Med J Aust 2007;186 (12 Suppl):S77, S79, S83-108.
Smith R. A good death. BMJ 2000;320:129-30.
Steinhauser K, Clipp E, McNeilly M, Christakis N, McIntyre L, Tulsky J. In search of a good death: Observations of patients, families, and providers. Ann Intern Med 2000;132:825-32.
Meier E, Gallegos J, Thomas L, Depp C, Irwin S, Jeste D. Defining a good death (successful dying): Literature review and a call for research and public dialogue. Am J Geriatr Psych 2016;24:261-71.
Lum H, Sudore R, Bekelman D. Advance care planning in the elderly. Med Clin N
Gursahani R. Communicating truth about serious illnesses in the Indian context. Nat Med J India 2015;28:269-70.
Rangachari D, Smith T. Integrating palliative care in Oncology: The oncologist as primary palliative care provider. Cancer J 2013;19:373-8.
Courteau C, Chaput G, Musgrave L, Khadoury A. Patients with advanced cancer: When, why and how to refer to palliative care services. Curr Oncol 2018;25:403-8.