Thursday, 10 April 2014

Many prefer to die at home, but few do: Poll

Families unaware of home palliative care services or think they will be costly, say experts
By Janice Tai, The Straits Times, 9 Apr 2014

MOST Singaporeans want to die at home and not in a hospital, yet not many of them eventually do.

That is the finding of a survey which asked more than 1,000 people for their views on death. Commissioned by the Lien Foundation, it showed 77 per cent of them preferred to die at home.

But according to the latest data from the Registry of Births and Deaths, only 27 per cent of Singaporeans would have achieved that wish last year.

Not many people are spending their last days at home despite the national push to age in the community, because some health conditions may take unexpected turns, said Dr R. Akhileswaran, Singapore Hospice Council chairman and chief executive of HCA Hospice Care, the largest home palliative care provider.

In such cases, patients may need treatment for complications, even if the diseases are incurable.

Still, in many other cases, terminally ill patients can receive palliative care, which alleviates pain and symptoms, at home rather than in hospitals or hospices.

Yet, as family sizes shrink, some may fear caring for their loved ones at home as they do not have adequate family support, experts said. Families may also be unaware of home palliative care services or mistakenly perceive these to be expensive.

The survey found that while three in four respondents were open to receiving palliative care, more than half felt it was expensive. Medical cost was their greatest fear about dying. Currently, home palliative care is free, and patients in hospices receive subsidies.

Dr Jeremy Lim, partner at global consulting firm Oliver Wyman who helped draft the report on the national strategy for palliative care in 2011, said many people think palliative care is costly partly because those who need it have depleted their finances for chemotherapy and hospitalisation.

Yet, it is far cheaper for such people to be cared for at home. It costs HCA Hospice Care about $1,500 a year to care for a patient at home - a fraction of hospitalisation costs, which can come up to about $500 a day.

Dr Akhileswaran said caregivers could be trained to care for patients at home.

Lien Foundation's chief executive, Mr Lee Poh Wah, said: "We need to turn the tide of people dying in institutions unnecessarily."

There could be better support for palliative care, he said. For example, a care coordinator could help liaise with the hospital to arrange for the patient's discharge, link him up with home palliative care providers and help him work out his end-of-life preferences.

Customer service deputy manager Ann Lee, 37, whose husband died of soft tissue cancer at the age of 39 three years ago, said having a team of doctors, nurses and social workers from Assisi Hospice visit at least once a week at home made the difference.

She said: "We were grateful for their medical and emotional support. It enabled my husband to spend quality moments at home with our then four-year-old daughter and one-year-old son."

Better to die a good death at home
By Andy Ho, The Straits Times, 25 Apr 2014

MOST Singaporeans would choose to die at home if they could. A Lien Foundation-commissioned survey shows 77 per cent would prefer to do so. But official records show only 27 per cent dying at home last year, a figure that has changed little over the years.

Dying has moved from the warmth of one's bed to the cold comfort of one in hospital.

This is so even when the terminally ill can receive palliative care, which includes good pain control, at home. A team of doctors, nurses and social workers from a hospice will visit the patient at home once a week or more often to provide medical and emotional support. Such care can be had for $1,500 a year compared to hospital care, which is far more costly.

Dying at home means family members can come and go from the dying person's bedroom as the end draws near. So, the person is with his loved ones up to his last breath. But people are denied this when they die in hospital.

There is also a conspiracy of silence about death, which is treated in the culture as something unspeakable. We strive assiduously to keep it out of the public eye, we do not like to talk about it.

This cultural angst about death fits nicely with what we have inherited from the West's science-based approach to health care, which has privatised death by medicalising and institutionalising it.

If death seems imminent, people are rushed off to a hospital and handed over to doctors who cannot know which particular medical crisis will prove the last one for any particular patient. So they persist in their therapeutic ministrations unto death.

In this world of high-tech medicine, neither health-care giver nor patient and family have space or time for a good death. It would appear very strange to us today, but, for a long time, doctors actually had little part at the deathbed.

This was because, up to the mid-17th century in the West at any rate, dying was still considered something profoundly religious. If anyone was to minister, it was the minister of one's religious persuasion, not doctors.

Yet, by the 19th century, doctors had come to dominate the dying context - but not because of significant advances in pain relief or prolonging life. In fact, no such advances in either area would come until the 20th century.

So doctors gained a place in the context of dying despite medicine's inability to offer anything new. One cause was that, with industrialisation and urbanisation, people became less religious.

According to the late British historian Roy Porter who was a professor of the social history of medicine at University College, London, certain developments in medicine, politics and religion began to change notions of the self, from the religious idea of an immortal soul within the body to a model of the self that stressed consciousness, or the mind.

His magnum opus, Flesh In The Age Of Reason: The Modern Foundations Of Body And Soul (2003) showed how changed mindsets led to changed practices.

Instead of regarding death as the portal to eternity, many people had, by the 18th century, come to regard living and dying as two endpoints along one continuum. Importantly, both points could be mastered, it was now said. Most of all, by the late 18th century, the emphasis had shifted to the embodied life: earthly happiness was an end in and of itself.

Also, early in the 19th century, doctors were struggling to set the medical profession apart from widespread quackery. In that struggle, the profession came up with various codes of ethics to boost its own standing in society.

One brilliant move the medical fraternity made was to institutionalise it as an ethical duty for doctors to aid rather than abandon the dying even if no more could be done, medically speaking.

Yet, what would the doctor actually do in that context? It was suggested that he stayed around to calmly provide any little bit of relief that was possible. In this way, the dying would not be bereft of hope until he expired.

So doctors could appear to master death itself by offering a hopeless hope in tiny portions. In this manner, dying was medicalised.

When no more could be done, medical ministrations were continued if only for the sake of trying to master this endpoint of the continuum of existence.

Up to 50 years ago, people in Singapore were quite averse to being hospitalised because we had inherited Western medicine along with this place of the doctor at the deathbed. Our forebears tended to associate hospitalisation with death, so it was strenuously avoided, if possible at all.

But today, with smaller family sizes, there may not be enough support to care for the dying at home. So taking the dying person to hospital helps to domesticate Death for a little while for a people unwilling to talk about it.

It is now taken for granted that it is best to have doctors and nurses around until the end. But this need not always be true, especially in medically futile cases.

For example, for the terminally ill who are in severe pain, narcotics provide relief but also cause the dying person to drift in and out of consciousness. Narcotics also cause intractable constipation, which can be very distressing.

So sometimes doctors will go easy on the narcotics but the pain returns. Then they boost the dose again but the dying person's consciousness becomes clouded again. Might not an earlier death be better than a drug-filled prolongation of life?

If so, doctors should learn to recognise medical futility sooner and be brave enough to let people go home to die earlier: death is not always the greater evil, so the real question is whether it is in any particular case.

Those who are very ill must ask themselves if dying is a greater evil than living on grossly impaired. Each person must answer it for himself as bravely as he can.

Only he who has done so might be able to ask to be discharged from hospital to head home to go gentle into that good night.

Let patients choose how they wish to end their days

I LIKE senior writer Andy Ho's article ("Better to die a good death at home"; last Friday).

I want to answer the question he posed: "Might not an earlier death be better than a drug-filled prolongation of life?"

Based on personal experience, the answer is "yes". My father, who died after prolonged pain and suffering caused by incurable cancer, wanted an earlier death but this was against the law.

Why are we afraid to discuss this very important subject? Birth and death are part of life. Why don't we ask dying cancer patients whether they would prefer a painless, graceful end rather than a prolonged drug-filled life of suffering? Even though my father preferred the former, the law did not give him a choice.

Even as a doctor, I could do nothing to stop his suffering and wasting away to a shadow of his former self, to the mental agony of his family.

Laws are man-made - when it is time for change, we must consider changing them. I am sure there are other Singaporeans who have faced this situation, and I hope they will speak up.

Medical science has advanced and the public has become more enlightened. It is time for Singapore to discuss the issue of allowing the dying to choose how they wish to end their last days on earth.

This is a human right. Let us not be side-tracked by emotional arguments about possible abuse, which are not relevant to the specific issue of personal choice.

George Wong Seow Choon (Dr)
ST Forum, 29 Apr 2014

Dad's wish fulfilled

My dad died at the ripe old age of 82 in the comfort of his own bed on April 10 ("Better to die a good death at home"; last Friday).

It was with great wisdom that he said: "The doctors do not know how to cure me any more, for they have not a cure for death."

Prior to his death, if there was anything that weakened him, my mum would call me in distress, hoping I would summon an ambulance to take him to hospital. I had to gently raise the issue of death to my mum: Everyone will face death some day; it's only where we end up - at home or in hospital?

It was certainly not my dad's wish to die in a cold isolated room. He trusted that his wish of going peacefully, without having needles stuck into him in a hospital, would be fulfilled. It was when my mum finally accepted that it was time for him to "migrate" to a better place that he went peacefully into that good night.

The more important thing is, he lived a fruitful and enjoyable life.

Jeannie Tan Guan Ngoh (Ms)
ST Forum, 29 Apr 2014

Let's talk about death

I THANK Dr Andy Ho for raising the pertinent issues of dying and death ("Better to die a good death at home"; last Friday).

As a medical doctor, I know that most patients do not "go gentle into that good night".

Certain physiological changes may occur when death nears. Patients may complain of great pain and discomfort, some may speak incoherently and, towards the end, the "death rattle" creeps in as fluids flood the failing lungs and breathing becomes laboured.

This can be traumatising for a layman to witness and the first instinct is to call for help.

A paramedic colleague shared a story of how a terminally ill patient wanted to die at home but, towards the end of his life, his family panicked and called an ambulance.

The patient had a do-not-resuscitate order but the paramedics were legally bound to perform cardiopulmonary resuscitation and defibrillation to revive him while taking him to the hospital.

The patient was admitted to hospital in a poor neurological state and eventually died there.

This illustrates the need for greater discussion and awareness about the process of dying.

Unsurprisingly, community awareness of palliative care is low. Most do not understand its purpose or refuse it, thinking it signifies that the medical team has given up on the patient.

Apart from raising community awareness of palliative care, the public also needs to be educated about advance medical directives and medical proxies.

The Advance Medical Directive Act is a step in the right direction, allowing people to decide if they want to have extraordinary life-sustaining treatment when they become terminally ill.

If the patient's wishes are not known and he is unconscious or not lucid, responsibility falls on the family to make his end-of-life decisions. It is a very difficult decision to make within a critical time period. The family may be unable to agree or is afraid to commit to putting a limit on medical interventions.

Dr Ho mentioned that "doctors should learn to recognise medical futility sooner and be brave enough to let people go home to die earlier".

Most doctors do recognise medical futility but, in a service-oriented health-care system, the demands of patients and relatives can override the doctor's recommendations.

Denying a terminally ill patient's right to choose extraordinary life-sustaining measures is a debate in itself.

Perhaps we all need to think about death and talk about it with our loved ones, so that when the time comes, our wishes can be honoured and our dignity preserved.

Joy Quah (Dr)
ST Forum, 29 Apr 2014

Be pragmatic about death

I SUPPORT Dr George Wong Seow Choon's call for Singaporeans to discuss the issue of allowing the dying to choose how they wish to end their days ("Let patients choose how they wish to end their days"; Tuesday).

Singaporeans, in general, are very pragmatic. So let's be pragmatic about death as well.

If I was dying and in great pain, I would choose to end my life surrounded by my relatives and close friends. I would say goodbye to them and tell them I am ready to "go gentle into that good night".

I would like to spare my loved ones the agony of seeing me suffering and being unable to do anything about it. I would go in joy and peace, not in guilt and regret. I cannot choose how I was born, but let me choose how I die.

As Singapore's population ages, we will have more people in need of health care and more dying people taking up hospital beds. By giving the terminally ill the choice to end their lives, more limited resources can be freed up.

There may be dying people who are hanging on to fulfil certain wishes or for other reasons. Let them be, but let others have the right to die in dignity.

If there are legal issues involved, let these be discussed. If a council has to be set up to vet each case, let that happen too.

Charles Loh Choon Cher
ST Forum, 1 May 2014

Conundrum of dealing with 'soon to die' patients

THE management of a dying patient, especially one who is suffering intractably with nothing to live for, is anything but simple ("Value of life not linked to its quality" by Mr Tan Jin Yong; Wednesday).

Doctors are faced with a conundrum when dealing professionally with "soon to die" patients.

The definition of "soon to die" itself generates lots of difficulties and is impossible to generalise.

In Singapore, euthanasia in all forms is illegal, no matter the ethical or pragmatic arguments for it. The most that doctors can do is not to actively resuscitate patients who have signed the Advance Medical Directive.

There is little fear that doctors will turn off life support systems when there is no brain death, and even this is done only after consultation with the patient's loved ones.

Where there is a glimmer of hope, or the chance of extending life even by mere weeks, most doctors will push for treatment. The alternative - leaving patients to die without hope or palliative care - is totally unconscionable.

Yet how many doctors have not opted for a strategy of masterly inactivity during the last week or two of a patient's days on earth? They see the futility of extending the inevitable and respect the patient's wish to die with dignity, without the ghastly invasion of intrusive medical equipment.

In hospices, during the patients' last days when the pain is unbearable and unremitting, some are given a bag of morphine to administer as they please to stop their suffering.

It says a lot that even in the face of meeting the most fearsome unknown event, many choose to dose themselves to eternity rather than continue with a meaningless and pain-racked short existence.

It sounds ambiguously like assisted suicide, and the medical fraternity has to live with its conscience.

Yik Keng Yeong (Dr)
ST Forum, 10 May 2014

Patient-controlled pain relief: Hospices reply

IN HIS letter ("Conundrum of dealing with 'soon to die' patients"; May 10), Dr Yik Keng Yeong said: "In hospices, during the patients' last days when the pain is unbearable and unremitting, some are given a bag of morphine to administer as they please to stop their suffering."

This is far from the truth.

The philosophy of providing support and care for terminally ill persons, so they may live as fully and as comfortably as possible, is universally accepted by hospice providers.

For patients with severe pain admitted to an inpatient hospice, all efforts, both pharmacological and non-pharmacological, are made to control the pain.

Often, the pain experienced by a terminally ill patient is not entirely physical. Psychological, social and spiritual pain may co-exist, and effective management of the pain requires a multidisciplinary approach involving doctors, nurses, counsellors and other allied health workers.

Prescribing opioids for cancer pain is the standard practice worldwide and these are commonly prescribed for the treatment of pain in the hospice. The opioid doses are carefully titrated by the physicians to achieve optimal pain control, contrary to what Dr Yik has described.

His reference to a form of drug administration, known as patient-controlled analgesia, as a means for patients to "administer as they please to stop their suffering" is misleading.

Patient-controlled analgesia is a well-accepted, evidence-based and controlled method where patients in pain are allowed to administer "booster doses" - which are also capped or limited by the treating physician - when needed to achieve rapid pain relief. This mode of administration is not commonly used as hospice staff are generally very responsive and able to attend to patients' pain quickly.

We understand that many people in Singapore may not be familiar with the work in hospice and palliative care, since there is still much reservation in talking about end-of-life care. However, many patients and families whom we have journeyed with have found comfort and solace in this approach.

We thank Dr Yik for giving us a chance to address these concerns and invite him to contact any of us to understand more about the work we are doing. It is our hope that with increased awareness and better understanding of hospice and palliative care, misconceptions such as those highlighted above can be addressed.

Ramaswamy Akhileswaran (Dr)
Chairman, Singapore Hospice Council
Chief Executive Officer & Medical Director, HCA Hospice Care

Tan Yew Seng (Dr)
Medical Director
Assisi Hospice

Wu Huei Yaw (Dr)
Medical Director
Dover Park Hospice
ST Forum, 21 May 2014

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