CPR vs. DNR--Life at any Price, or Death with Dignity?

Should a patient's life always be prolonged as long as possible? Whatever the response to this question in an ethical sense, most family members are uneasy about making such decisions. However, if the patient signs a do-not-resuscitate (DNR) order, they may be freed from ongoing suffering without the need to impose life-and-death decisions on family members.

While the sunset is magnificent, it also signals the end of the day-the coming of darkness. When life reaches its final stage, the issue of how to manage a dignified end must be faced by medical professionals, families, and the patients themselves.

Taiwan was the first country in the Asia-Pacific region to pass legislation protecting a person's right to a dignified death. Legislation from 2000, the Hospice and Palliative Care Act, gave people the right to complete a DNR request.

However, when patients were unconscious or otherwise unable to clearly express their wishes and no DNR had been completed, the burden of decision-making fell onto the shoulders of close family members.

And the act was not perfect. Family members had the right to withhold life-sustaining treatment, but no right of withdrawing it once it was being provided. In other words, unless the patient had -already signed a DNR order, once life support was being provided, it was legally impossible to remove it.

A further complication was the apparent paradox that support could not be removed from a hospitalized patient, but was possible for patients at home. Established custom was for family members to take end-of-life patients home, remove their life support, and allow them to pass away in peace. As long as the "discharge against advice" and "end-of-life patient discharge consent" forms were properly signed, there were no legal repercussions.

In order to have the patient at home to the end, support procedures were completed by family members, sometimes with the assistance of a paramedic. On January 10, 2011, however, things changed. Amendments to the Hospice and Palliative Care Act were passed by the Legislative Yuan which grant family members the right to withdraw support if certain very strict conditions are met: consent must be provided jointly by the patient's spouse and immediate family members (adult children, grandchildren or parents). Then the decision must be reviewed by the medical ethics committee of the hospital.

The medical community, however, believes that these conditions are too prescriptive and often impossible to attain in practice.

Shih Chung-liang, director of the Bureau of Medical Affairs, Department of Health (DOH), points out that the amendments are aimed at providing a "third opportunity" for a dignified death. The first opportunity is when the patient signs a DNR order. The second is when family members agree not to provide life support. In the past, if these two opportunities were missed, support could not be removed after it had been provided.

"It's a good time to consider the question of how to die with dignity," says Harry Huang, a neurological surgeon at National Taiwan University Hospital. Although the detailed regulations to implement the amended act are yet to be released, the conditions are so strict that it can hardly be counted as another opportunity. The best thing for people to do remains to sign a DNR order in advance. "If you want to die with dignity, you cannot rely on others. You should sign an advanced instruction."

Elderly people need more than just advanced drugs and medical technology to keep them alive. The company of their families and friends to share this critical stage of their lives is also precious.

How many people in Taiwan have signed a DNR order? Most agree that DNR directives are a good idea, but the forms are difficult to obtain. Once completed, they are sent to the Taiwan Hospice Organization, which then forwards them to the Bureau of National Health Insurance, and the person's directive is added to their health insurance card, the entire process taking 21 days. However, not everyone bothers to send their DNR declarations to the hospice organization, so only they and their family members know that a DNR order has been completed, and this data is excluded from the statistics. But according to figures from DOH, up to December 2010, 51,954 people in Taiwan had signed DNR consents and had their requests noted on their health cards.

Some, on the other hand, oppose the idea of a DNR and are reluctant to sign. Lin Zhenwei, a 50-year-old, believes that there is little difference between a DNR and a declaration of suicide. "Who knows what disease one may contract in the future, or what medical treatments may be possible? If a free choice between life and death is to be provided, why not simply legalize suicide and promote euthanasia?"

The medical community also lacks consensus. "Although medical professionals who oppose DNR have not been very outspoken, those in favor are even quieter," says Dr. Huang.

The ethical issue of withholding or withdrawing life support has been an ongoing issue of debate. Whether or not to put a person onto life support seems the less contentious question; by contrast, withdrawal of support already being given seems much more controversial, probably because many see it as little different from murder.

Huang argues that accepting the natural limits of one's life is very different from actually stopping life. "DNR is not about intentionally ending a life; it is about having a choice."

"The difference between performing CPR or not may be only a matter of a few more hours or days of life. The important point is whether doctors are willing to spend the time with a patient's family to explain the situation clearly." Chen Shew-dan, director of the non-surgical intensive care unit at National Yang-Ming University Hospital, published Say Goodbye to Cruel Kindness, a story based on her own experience of assisting her mother in hospice care. She points out that for doctors, providing ventilation support only takes two to three minutes and can create income for the hospice, whereas not doing so may mean a lot of time spent explaining the reasons to the patient's family. It's not difficult to see which action is the more "logical" for doctors.

Current medical practice has lengthened the dying process, creating a difficult predicament for doctors who must decide how much effort should be put into saving the patient's life. This results in situations where a patient is in fact neither dead nor alive.

As an expert in acute neurological treatment, Harry Huang often handles cerebral trauma and stroke patients, so he experiences a relatively high death rate.

He points to the mass of high-tech equipment that has been introduced into Taiwan's intensive care units (ICUs) over the past 20 years. One patient with heart and lung failure, for example, had their life prolonged for six to seven months (breaking a world record) through the use of an extracorporeal membrane oxygenator (ECMO). The patient was given anticoagulants which led to a cerebral hemorrhage, and poor circulation led to severe discoloration of the limbs. Although the patient didn't die, they didn't recover either.

The use of ECMO can blacken patients' limbs; ventilation support can result in teeth loss; CPR can crush ribs, damage internal organs and cause internal bleeding. "What, after all, are we trying to achieve?" Dr. Huang questions. Ventilators and cardiac assistance dev-ices are becoming increasingly advanced, and technology is developing a much enhanced ability to maintain a heartbeat. Yet we need to ask: "Is this life, or a merely an extension of dying?"

"The most frightening thing is the crowding-out effect," says Huang. The "misuse" of ICUs to accommodate the dying has brought a number of negative impacts: the ICU has become a virtual annex of the mortuary and as a result of the lack of beds, many people die in emergency departments or in ambulances. Some 30-40,000 terminal patients take up ICU beds each year; if each person's stay could be reduced by only a couple of days, about 6000 to 7000 lives could be saved.

The fall of tung-oil tree flowers on the ground in May looks like snow. It evokes feelings of passing and sadness, and reminds us that everybody must face the end of life no matter how hard they may try to hold on.

Although many patients leave ICUs alive, they often have to rely on ventilators to survive. Many are transferred to respiratory care centers (RCCs) to spend their final hours.

National Yang-Ming University Hospital in Yilan City has established an RCC, and for as long as can be remembered, the 17-bed unit has been full. Head nurse Wu Ya-wen notes that seriously ill patients in the RCC who may have suffered brain injuries in a car accident, or suffer from muscular dystrophy, mucopolysaccharidosis or other disabling afflictions, can spend up to two or three years at the center.

A young man suffering from congenital mucopolysaccharidosis attempted suicide because he was unable to bear the suffering. His life was saved, but his suffering continues. His father believes that he will get better, and refuses to give up hope, coming to visit every day. Once the father insisted on him wearing spectacles regardless of the fact that he had lost his sight. One cannot help feeling sympathy for them. "Father and son are suffering equally," says Wu.

The pictures opposite show an ICU full of medical technology (top), and an RCC where patients rely on ventilators to survive (center). For people living and dying in these modern times, the process of passing away has become increasingly complex.

Choosing between what might be considered a disregard for human life, and the opposite extreme, excessive care, poses a difficult challenge for doctors and families.

Chen Shew-dan points out that assessing the possibility of rehabilitation for an acute-care patient takes just a few days for an experienced doctor. But at which stage should a doctor stop: where should the line be drawn? How far from death is the patient? There are no easy answers to such questions.

Many argue that saving patients' lives is their prime responsibility: the core of their ethic. They must do all they can; this is their reason for being. And they believe that such an attitude will obviate disputes.

CPR was developed in the US around 1960, originally for application in cases of cardiac arrest and respiratory failure due to drowning, heart attack, high blood pressure, car accidents, electrocution, poisoning, gas inhalation, or blockage of the respiratory tract. Before a patient goes to hospital, CPR is used to reduce damage (necrosis) to brain cells, organs and tissues.

In situations where someone needs CPR, chest compression, defibrillation and ventilation, more often than not using these procedures doesn't do any harm. But if they are not used, the medical practitioner responsible can face serious professional issues. Thus, CPR has become an almost inevitable form of suffering inflicted on many patients before death.

In Dr. Huang's experience, some patients will survive after receiving appropriate emergency medical treatment, but others will not be so lucky. As it is very difficult to judge an individual patient's situation with perfect accuracy on the spot, most practitioners will fight to the last minute with every technique they know.

Compared with the patients fighting for their lives in the ICU and RCC, these elderly people in the park enjoying the sunlight and a gentle breeze seem completely at ease.

For family members, every decision represents a turning point in their loved one's condition, for which they have to bear responsibility and often regret.

Georgette Wang, a retired professor from National Chengchi University, wrote an article entitled "Medicine Sacrifice" on the fourth day after her mother passed away. She describes the difficult relationship of cooperation and confrontation between herself and medical science and the insurance system after her mother went into hospital. The article reveals the most deep-felt emotions of a patient's close family: "I had no medical training, but I had to make the correct decisions about whether to allow treatment, or to try to protect her from further suffering. I didn't want my mother to suffer, so I delayed treatment for as long as possible. But of course I wanted her to recover and eventually I relented, causing her terrible suffering until finally she passed away. I am not sure that I will ever forgive myself for allowing that."

Wang thought very carefully about whether to allow her mother to be intubated. She decided to go ahead but later regretted the decision. "The difficulty is that families are too frightened of being responsible for a patient's death because they disallow treatment. Who has the courage to bear the responsibility for the death of a loved one?"

Sometimes it is really hard to let go.

Ah-wei's father suffered from motor neuron disease (amyotrophic lateral sclerosis, ALS) and passed away three years ago; the pain is still with him.

"When the end was near, I couldn't accept the fact that he was leaving us. The doctor tried to prepare us for the end, but how does one prepare for such an event? We don't run on computer programs."

"When my father was on the brink the first time, the medical staff brought him back, but the doctor actually suggested that next time, we needed to think about what should or should not be done. It made me really angry: none of us wanted to let him go, and my father himself, who was on intubation, was also reluctant!"

"DNR may prevent a patient's suffering, but the level of suffering varies," says Ah-wei. The pain of losing a loved one is a torture that lasts for the rest of one's life; it's the pain of a mortal wound.

And there are some cases of people awakening from a vegetative state after years in bed. Some find it very difficult to give up hope, and spend their lives waiting for a miracle.

"The number of such miracles will become fewer," says Huang. Since 1995, electronic indication of brain function and imaging technology have advanced dramatically, so whether a patient will revive or not is today less difficult to estimate. If a patient's central nervous system is damaged, for example, recovery is impossible, and waiting for a miracle, pointless.

The pictures opposite show an ICU full of medical technology (top), and an RCC where patients rely on ventilators to survive (center). For people living and dying in these modern times, the process of passing away has become increasingly complex.

Dr. Chen must keep telling patients' families that sometimes love means letting go.

"People don't understand the extent of the pain the patient is suffering, so they think that keeping them alive is an expression of deep love," says Chen. Many patients in nursing homes are unconscious with tracheostomy tubes, nasogastric tubes or catheters, or they suffer from bedsores. A ward in an RCC is a chamber of horrors: patients may have limb deformities, tongue hanging out with saliva and sputum wetting their chest; they may be bedridden and relying on ventilators for survival. "I don't know for whom the medical staff are working, nor for whom the patients are suffering: for themselves, or their loved ones?"

Are some doctors trying too hard to keep their patients alive? No doctor wants a patient dying at their hands, and no one wants to admit that a patient has no chance of survival.

"I'm always willing to admit that I can't save a patient's life!" says Dr. Huang. Doctors must learn to let go rather than worrying about the repercussions of a death. Doctors tend not to talk about "no chance," but talk instead of "a high mortality rate" or "we'll try our best," "fighting to the last minute." Most families don't grasp what they're being told, interpreting such phrases as indications of hope. They reason that the doctor hasn't given up, so why should they.

The pictures opposite show an ICU full of medical technology (top), and an RCC where patients rely on ventilators to survive (center). For people living and dying in these modern times, the process of passing away has become increasingly complex.

Why is most of the support for the DNR coming from doctors who work in acute illness areas? "Because emergency care is fighting against what is natural; it's all too horrible and too hard-we can't bear to see patients suffer!" says Huang. As long as they are not too abrupt, most people will understand when the doctor mentions "death with dignity," and will appreciate having someone explain the situation.

It's also possible to look at "death with dignity" purely from the perspective of the appropriate use of medical resources.

While many are unable to countenance any discussion of life issues based on resource allocation, the fact is that under the umbrella of National Health Insurance (NHI), Taiwan has become a "kingdom of dialysis," and is on its way to becoming the "realm of ventilators." Over the past decade, the number of respiratory-care beds has quadrupled and 21,000 patients commenced the use of ventilators, all costing nearly NT$24.3 billion and accounting for 4.76% of annual medical expenditure.

When the writer was visiting a hospital to research this article, a passerby came along eagerly wishing to express their views. "The key issue is the NHI. Because families no longer have to pay, they tend to use multiple resources to help extend patients' lives in order to show their filial piety. Some also worry about their private health insurance entitlements: they think that the more resources they consume, the more benefit they receive."

While these opinions are perhaps blunt, they hit the nail on the head in one way in summarizing the plight of the medical system.

"But shouldn't we always do our best to save peoples' lives?"

As an alternative to active treatment, hospice care is in fact an appropriate choice. Chao Ko-shih, professor of nursing at National Cheng Kung University Hospital and a supporter of hospice care, points out that end-of-life patients need "care" rather than "cure."

Jaffa Chang, executive director of the Hospice Foundation of Taiwan, notes that 37 hospitals provide hospice care wards and 64 provide a hospice care home service. Hospice care patients benefit from NHI funding to the tune of NT$4,930 per head per day; diseases covered include terminal cancer, ALS, dementia, brain lesions, heart failure, chronic obstructive pulmonary disease, acute pulmonary fibrosis, chronic liver disease and cirrhosis, and renal failure.

Hospice and palliative care aims to alleviate the suffering of terminally ill patients with no positive or invasive treatment. While the annual death rate in Taiwan is about 155,000 people, only seven to eight thousand people receive hospice care. Many of those not in hospice care may have experienced suffering from perhaps "excessive" medical treatment before they died.

Harry Huang points out that ICU patients often require 24-hour care in order to maintain a heartbeat, but patients' bodily functions are generally very poor. If bodily infusions are not discharged, the body can swell and sometimes distort the limbs. In only a few days, a patient can swell an extra 10 kilograms-to the extent that even the patient's family cannot recognize them.

When the end of the line is reached, one is supposed to disembark politely and wish friends and loved ones goodbye. If people are unable to clearly express their wishes at this stage, then it may happen that the person is ready to leave, but others may not be willing to let them go.

There is no doubt that some people will regret not signing a DNR. But there is also a natural fear of being allowed to die because life-sustaining support has not been provided, and hence many are reluctant to sign. "What if the patient has a chance, but has signed a DNR, and the doctor knows it. Will that doctor waste their time maintaining that life?"

Dr. Huang persuaded his 92-year-old father to sign a DNR on Chinese New Year's Day this year. He explained: "If you sign a DNR, I will be free to make decisions without restrictions. Why? Because I will have more options." When life-sustaining equipment is ineffective, when suffering continues unrelieved, support can be removed freely and without guilt.

Some say that death is not the real tragedy: it is the meaningless suffering that results when life is prolonged beyond natural limits.

To live or to die? To avoid leaving that question for your loved ones, perhaps ever-yone should think carefully about their own end-of-life issues. Are you willing to accept medical treatment such as endotracheal intubation, cardiac massage, cardiac shock or CPR in order to extend your life beyond its natural end?