How would you wish to die?

Hippocratic physicians were among the first to question the ethical limits of medicine – of when and when not to intervene. Hippocrates wrote that the purpose of medicine is “to do away with the sufferings of the sick, to lessen the violence of their diseases,” but also “to refuse to treat those who are overmastered by their diseases, realising that in such cases medicine is powerless.” Knowing the limits is an art and requires an appreciation of the power of nature.   The basic ethical premise of ‘first, do no harm’ is too often forgotten in the drive to treat and beat death.  With ever advancing technology, allowing a natural death is counter-intuitive to many medical professionals.  However, if a treatment has no hope of providing benefit to the patient (as in the case of a ventilator used in end-stage lung cancer), it is likely to worsen suffering and should be deemed as harmful.

Dying in ITU

In 2014 sixty three percent of inpatient deaths in my hospital were in intensive care (ITU). Being a cancer centre, the vast majority of these deaths were patients with end-stage metastatic cancer.  Patients with metastatic cancer who develop progressive organ failure are usually in the throes of dying, and medical heroics in the form of life-support measures do not prevent this from happening – they merely act to prolong suffering.

Part of the problem is that doctors are bad at diagnosing dying.  It can be a challenging diagnosis to make and understandably there is a reluctance to do so if there is any reasonable chance of recovery with further active treatment.  This said, it should be a diagnosis that is made as it changes the patient’s journey. The focus should shift from life-prolonging treatment to supportive care, paying attention to comfort, symptom control, as well as the patient’s wishes including who is present (ie. family, priest) and where they wish to die. Blood tests, investigations and monitoring are no longer useful and should be stopped.

The most common scenario in this hospital is that doctors see the deterioration and respond by upping the intensity of care.  The dying patient is often transferred to ITU, where the doctors instigate life-support measures, insert central lines, nasogastric tubes and start expensive futile medications.  In the worst cases patients die on invasive ventilation.  Family distress is heightened by limited visiting hours – they can only see their loved one for a few hours each day. Death is transformed into a slow and often painful and lonely experience.

The function of ITU is distorted.  Rather than providing temporary organ support for patients with potentially reversible organ failure it becomes a halfway house between life and death.

In the NHS ITU is a ‘closed’ unit; the ITU consultants screen and control admissions so inappropriate cases such as palliative cancer patients are not admitted.  In my hospital (as is the case in many private institutions worldwide), the ITU is ‘open’ and any doctor in the hospital can decide to admit their patient.  Many of these doctors say they admit dying patients to ITU because of pressure from families, and a fear of litigation if they do not succumb.  Rarely are these families making informed decisions based on a clear understanding of the circumstances.  There is a lack of communication that the patient is dying. “We are doing our level best” is a phrase I commonly hear from families and doctors alike. This usually means maximal intervention until the very end.  Too often “our level best” does not equate to what is in the patient’s best interests.

 The poor die in agony in neglect, the middle class die in agony in ignorance and the rich die in agony on a  ventilator.  No one gets a dignified and pain free death.

Dr Mitra, founder of EIPC

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Slums in Kolkata

The concept of a good death

I recently gave a lecture on the concept of a ‘Good Death’ to forty senior cancer doctors who deal with death daily.  From the audiences reaction it seemed to be a novel discussion point.  I invited them to contemplate the question “How would you wish to die?”  This is very personal, but most people would agree on certain aspects such as being pain-free, having symptoms controlled and being able to spend time with loved ones.

I would want to die at home, some people may wish to die in hospital.  How about intensive care?  A recent study in the US showed that 88% of doctors would forego high-intensity treatments for themselves at the end-of-life.  The study suggested that this is because doctors witness the tremendous suffering their terminally ill patients experience as they undergo ineffective treatment.  Asking a question like this helps doctors reflect on the gap between their own wishes for care and the care they are providing for others.

To prevent palliative patients dying on ITU there needs to be a recognition that medicine cannot prevent death, and that intensive care can do more harm than good.  Educating healthcare workers about death and treating dying patients is the first step.  Better communication and policies to prevent terminal patients being admitted to intensive care is also needed.  For change to happen there needs to be a shift in paradigm, and this will take time.

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A long way to go

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