The issue of assisted suicide has increasingly been raised for anyone involved in end-of-life care.  There are certain medical policies in place in my state of Massachusetts, which does not permit physician-assisted suicide on the grounds that a doctor’s mission is to heal and do no harm based on the Hippocratic Oath.  This oath is instilled in all doctors in medical school, so our role at the end of life is to minimize pain and suffering and not do anything to prolong unnecessary suffering, such as resuscitating or intubating the patient after the heart stops or the patient can no longer breath on his or her own.  

However, Massachusetts is one of over 20 states which are considering death with dignity – i.e.: assisted suicide laws, and five states – California, Oregon, Vermont, Washington, and Montana – have already made it legal.  So legally, there is growing pressure from death with dignity advocates to make assisted suicide legal – and even the terminology has been changing to make this process more acceptable – such as calling this one of the “end-of-life” options for a terminal patient.  In turn, this push to legalize this approach has triggered a national debate about whether assisted suicide, however it is called, should be legal, and what individual doctors should do when they encounter a request by a patient.  So what should doctors and patients do?  Following is a discussion about the present state of the issue and the arguments pro and con, so each person and doctor can better think about the situation and make their own decision for themselves.

A Little History 

The move to make assisted suicide legal has a rather tortured history.  The first drive to legalize it began as part of the eugenics movement in the early 20^th century, and in Ohio, a bill was introduced in 1906 to legalize it after the mother of heiress Anna S. Hall died a painful death in cancer, but the Ohio legislature overwhelmingly rejected the bill.  Then, in the 1990s, the issue came to public attention when Dr. Jack Kevorkian, who had assisted over 40 people to commit suicide in Michigan, helped a 54-year-old woman, Janet Adkins, who had early-onset Alzheimer’s, commit suicide.  Though he was charged with murder in December 1990, the charge was dropped since Michigan had no laws outlawing suicide or doctors providing medical assistance.  But Kevorkian sought to become something of a martyr for the cause when he went beyond just assisting a suicide to actively killing a patient by giving a man a lethal injection.  He even showed himself doing so in a video aired on 60 Minutes.  Soon after the tape was aired, he was charged with second-degree murder, was sentenced to 10-25 years, and after serving 8 years, he was released in 2007, now a very frail and weakened man, who died in 2011.

Still the 1990s marked the beginning of the modern movement, after Oregon passed the first Death with Dignity Act in 1994 that was finally approved and put into practice in 1997.  This legislation provided the fundamental requirements for how physicians might assist in suicide legally, though no doctor had to participate in doing so. Should a physician object, he could refer the patient to another doctor willing to provide the requested assistance.  

However, under this act in Oregon and the other four states where assisted suicide is a legal option, certain required guidelines have been established to protect against abuse.  As described on the Death with Dignity website (www.deathwithdignity.org), the patient has to be a mentally competent adult who has “a terminal illness with a confirmed prognosis of having 6 or fewer months to live.”  The patient has to voluntarily make the request to receive a prescription medication to “hasten their inevitable, imminent death.”  Moreover two physicians have to confirm the patient’s “residency, diagnosis, prognosis, mental competence, and voluntariness of the request.”  Moreover, there are two waiting periods, one between making the oral request, and the second between receiving and filling the prescription.  Additionally, the physician merely prescribes; the patient has to take the medication him or herself.

Though Washington passed a Death with Dignity Act in 2008 and Vermont did so in 2013, efforts in California went nowhere despite bills introduced in 1999 through 2006.  The modern controversy really began with the case of Brittany Maynard from Orange County, California.  Since she couldn’t get physician assisted suicide in California, she moved to Oregon, and her case was widely publicized.  She even recorded a video before she died, as she announced she would, on November 1, 2014.  This video was then shown in hearings in Sacramento on the End of Life Option Act, which was signed by Governor Jerry Brown in October 2015 and went into effect in June 2016.

Since then, the 21 states considering Death with Dignity (or End of Life Option) acts are primarily in the West and Northwest, such as Arizona, Colorado, Hawaii, Kansas, Michigan, Minnesota, Missouri, Nebraska, Utah, and Wisconsin, or in the New England-New York area, including Maryland, Massachusetts, New Hampshire, New Jersey, New York, Rhode Island, and the District of Columbia.  So the push is on to make this procedure legal, and as more states pass these laws, the pressure is likely to continue in other states to pass these laws.

What Are the Pros and Cons?

As a doctor caring for end-of-life care, I have been following these developments for end-of-life care laws and the controversy surrounding them, as the legality is considered in each state.  These laws could affect the practice of me and other doctors, since in discussing end-of-life care choices, such as whether to opt for a DNR/DNI status, which most patients chose, some patients may ask for medications to end their life, once their condition is deemed terminal with only 6 months to live.  However, I currently do not have the legal option to do this, and while some doctors might choose not to provide these medications even if they have this legal option in the future, others might make that choice. So what are the pros and cons?  

The pro argument, of course, is that this assisted suicide option gives patients with a serious illness the opportunity to have control of their own bodies and lives. It also addresses their concern about physical and psychosocial distress, by giving them the option of ending their life before their pain and suffering becomes too great.  Moreover, the supporters of assisted suicide point to the effects of the law in Oregon, which has the longest experience with such a law. For example, a study by Ganzni and his colleagues which appeared in the March 9, 2009 issue of the Archives of Internal Medicine showed that out of 56 individuals inquiring about physician-assisted death, 41 had died, but only 9 had died after receiving lethal doses of a medication prescribed by a physician.  The major reason they wanted a doctor to assist them was that they wanted to maintain control over the circumstances of their death and die at home.  They also had concerns about their loss of independence and their future pain and disability.  So the pro argument is that the patients gain this control and have the ability to take the doctor prescribed medications or not.  Another argument in favor of this choice is that if people have the right to refuse life-saving treatments, they should be free to choose to end their own lives, too.

But the con side has many strong arguments against the practice, too.  One is that if the doctor follows the patients’ wishes to hasten their death, doing so undercuts the essential role of the physician which is that of a healer who does no harm.  Another argument against the practice is that patients already have the right to refuse life-sustaining treatments, and they can end their lives in ways that do not involve physicians. Another concern is that patients could be pressured to choose the assisted suicide option by family members who stand to inherit money when the patient dies or feel the patient has become a burden, because of the astronomical costs of continued medical care and the coming expiration of insurance coverage.  Or insurance companies may push for this option because they want to save money they would otherwise have to pay out for medical care. Still another argument is that doctor’s assessment of the patient’s prognosis could be inaccurate, and a patient deemed terminal could well recover; or at least might live for many months or even years longer. Then, too, seriously ill people may suffer from undiagnosed depression or other mental illnesses that affect their ability to make an informed decision; so if their depression or mental illness was treated, they might not choose to seek out assisted suicide.

On the other hand, on the pro side, there is no evidence of coercion or abuse in studying how the law has operated in Oregon, where over 700 people have taken their lives with prescribed medication, including Brittany Maynard, as of January 2015, when an article about the debate: “Physician-Assisted Suicide: Yes or No? The Great Debate” by Emily Lea Barry appeared in Medscape, a website devoted to medical issues (www.medscape.com).

It also seems that if patients had more knowledge about and access to palliative care and hospice programs, this could reduce their desire to take lethal medications, although many patients might still want to take them.  The number of patients opting to go into a hospice or receive palliative care is certainly growing.  For instance, the number of hospice providers grew near three times from 2312 to 5800 between 1994 and 2013, while the percentage of hospitals with over 50 beds that have palliative-care programs grew from 24{36b4843c1e91ee13efbe8c3a798c5619926a11e7f2c1b4172ed6d3c5e5f1165f} to 72{36b4843c1e91ee13efbe8c3a798c5619926a11e7f2c1b4172ed6d3c5e5f1165f} in that same period, according to an article in Modern Health Care: “Assisted-Suicide Debate Focuses Attention on Palliative, Hospice Care” by Lisa Schencker in May 16, 2015.  At the same time, 93{36b4843c1e91ee13efbe8c3a798c5619926a11e7f2c1b4172ed6d3c5e5f1165f} of the terminally ill patients who chose to end their lives were in hospices before they died, showing that end-of-life patients may opt to do both – stay in a hospice or palliative care program until the pain becomes unendurable and then seek out medication from a doctor as a final solution.

What do doctors think?  As of May 2016, according to an article: “Physician-Assisted Suicide Up for Debate,” by John N. Frank in Medical Economics (http://medicaleconomics.modernmedicine.com/), the American Medical Association’s official position is to oppose this suicide, and the American College of Physicians does not support legalization of physician-assisted suicide either.  The American Academy of Family Physicians doesn’t have a policy on this issue, though it follows the AMA code of ethics.  However, on the state level, in the states where the practice has been legalized, the state medical association has commonly taken a neutral stance, such as in California. And some medical groups have supported end-of-life legislation, such as the American Medical Students Association, which signed a letter of support for the California legislation, on the grounds that medical decisions belong to the patients and their care providers.

Given these conflicting points of view, what is the best approach?  I can’t really answer that question, since there are arguments by credible doctors, ethicists, and others on both sides of the fence.  Thus, I think it ultimately comes down to one’s own personal code of ethics.  It would seem that legalization is the likely wave of the future, especially since the Brittany Maynard case focused public interest on the issue, and increasingly, proposed legislation to legalize assisted suicide has gained popular support and passage in a growing number of states is likely.  In turn, the passage of this legislation could influence the position of the major medical groups that now oppose the practice to perhaps take a neutral stance.

But for now, the outcome of the move to make assisted suicide – or the end-of-life care option – as it is called in most of these bills, is unclear.  Thus, my own position is to take a neutral stance, too.  I think it is important to consider the issue; but then decide for yourself what your approach would be whether you are a patient or a physician involved in caring for a patient with a terminal condition.  

Dr. Sebastian Sepulveda has had nearly 30 years’ experience as a doctor and professor of medicine, working with patients in a community hospital and personally caring for them, many times as the sole provider of end-of-life care.  Since 2005, he has been in private practice, dealing with private outpatients and with inpatients in hospitals, especially with those who have what appears to be a terminal condition.  His book At Death’s Door and Death’s Door TV series pilot based on his work will be released in 2017.  His website is at www.atdeathsdoor.com. 

One of the big end-of-life care issues is the DNR/DNI or “do not resuscitate/do not intubate” controversy.   This issue comes up, because normally in an emergency life-threatening situation, the medical professionals who deal with the patient, from paramedics to nurses and doctors, are trained to do everything they can to revive the patient.  This goal of preserving life is part of the medical oath, which is taught in medical school and reinforced again and again in everything medical professionals do in dealing with patients – “do no harm and do everything you can to heal the patient.”

 For example, in an emergency situation, such as when a patient has been in a car accident or has nearly drowned, so that their heart rhythm or breathing becomes severely irregular or stops and their blood pressure or their pulse drops dramatically, the patient is normally placed in a Code 99 status.  In the hospital, this situation usually leads to someone pressing a button on the wall to trigger an emergency response from all available medical personal. Within minutes, the patient’s room fills up with 15 to 20 people, and a medical team begins cardiopulmonary resuscitation to restart the patient’s heart and breathing.   

The basic process involves checking the patient’s airway to see if it is open, determining if the patient is still breathing or trying to breathe, and examining the patient’s circulation to determine if he or she still has a pulse and blood pressure. After that, since the team has only a few minutes to revive the patient’s breathing and circulation, the team members quickly organize themselves based on their predetermined roles, such as to lead the team or handle a particular function, such as monitoring the machines, providing CPR, launching compression, or providing medications by injection to an unconscious patient.  

To carry out these tasks, the team members may ask a series of questions, such as is the patient breathing or does the patient have a pulse. To deal with the urgency of the situation, the doctor in charge of the medical team organizes who does what.  Then, the trained team self-organizes to create a coordinated effort in which everyone knows what to do to restore breathing and circulation.  Each person has a clear knowledge of what actions to take to help the patient survive.

 A key consideration is the way different bodily processes can affect each other.  A good example is the way the lack of circulation of the blood when the heart stops can have the most deleterious effects most quickly, since after 3 minutes, a lack of blood to the brain can result in irreversible brain damage that shuts off other bodily functions.  By contrast, a person can go without breathing for up to 3 to 4 minutes without irreversible damage. However, in practice the two systems affect each other.  For example, if a patient’s circulation stops, within seconds his or her breathing will shut down, and the medical team will simultaneously attend to both systems at the same time.  The process is like having to deal with a bonfire that has gone out of control, so everything is erupting in flames at once. In response, highly standardized protocols are used to deal with the evolving situation.  

Certainly there are cases where a problem in breathing occurs due to congestion in an airway, such as when a person choking on food has a cardiac arrest, or when a heart attack leads to difficulty in breathing,.  In such cases, a doctor or another person have to act quickly to resolve the initial problem, such as dislodging the food from a person’s airway or massaging the person’s heart through a cardiopulmonary resuscitation.  The goal is to seek to revive the patient’s circulation and blood pressure in order to revive the patient and return him or her to an earlier or baseline status.  But generally the heroic action of one person is the exception in most emergencies, since a full team effort is needed to revive the patient. 

Whatever the situation, if a medical team is successful in this everyday emergency, the patient can be revived successfully and after a period of healing return to his or her everyday activities.  Even so, the potential for saving the person can be quite low he or she has had a true cardiac arrest, since the mortality rate is about 90{36b4843c1e91ee13efbe8c3a798c5619926a11e7f2c1b4172ed6d3c5e5f1165f} not matter what anyone does.

 However, this recovery after an emergency is quite different from the experience of the end-of-life patient who has many medical problems which lead to a sudden heart stoppage or the cessation of breathing.  In this case, it is generally not a good idea to apply any emergency treatments to save the patient, because these will make his or her condition even worse than it already is, such as by breaking the ribs during a resuscitation procedure, leading to continuing pain and suffering.  That’s the reason for the DNR/DNI option, whereby the patient can opt not to receive any emergency treatment to restart the heart or breathing, because the patient will only experience more pain and suffering if the revival is successful.  Then, once this DNR/DNI option is exercised, the medical team will not do anything, so the patient can die naturally in peace within a few minutes, which is usually the result when the heart and breathing stop.

Dr. Sebastian Sepulveda has had nearly 30 years’ experience as a doctor and professor of medicine, working with patients in a community hospital and personally caring for them, many times as the sole provider of end-of-life care.  Since 2005, he has been in private practice, dealing with private outpatients and with inpatients in hospitals, especially with those who have what appears to be a terminal condition.  His book At Death’s Door and Death’s Door TV series pilot based on his work will be released in 2017.  His website is at www.atdeathsdoor.com. 

In At Death’s Door, I didn’t discuss some of the legal complications, because some of these issues are too complicated.  So here I wanted to discuss some of these subjects, which were left out of the book.

As noted in the book, the different procedures that hospitals and I follow are shaped by state and federal laws and regulations affecting end-of-life care.  While we can offer our expertise about what treatments to provide under what conditions and when to apply the DNR/DNI or modified DNR procedures, the laws affect what we can and cannot do.

An example of a legal quandary is the patient who is too sick to want to live, but he or she opts to struggle to survive to please family members who want to do everything for that person to remain alive.  The legal issue comes up when the patient signs a legal DNR/DNI status document; but then seeks further treatment to overturn that status, despite medical advice that any treatment will only prolong his pain and suffering.  So knowing the patient is only doing it for the relatives, legally, what should the hospital and doctors do?  Should they provide care or not when it only adds to the patient’s suffering until a certain end in the very near future?  And then further complications can ensue if the patient appears to go through a period of temporary healing, such as a remission of a cancer, when the patient still has other medical problems, so his or her condition is still terminal.

Fortunately, most of these cases resolve themselves without any litigation, since patients and their families simply accept whatever is.  But such situations are ripe for litigation with uncertain results if the patient’s family wishes to pursue this after the patient’s death.

One of my most memorable cases was my experience with Mr. Garfinkle, a former real estate investor of 85, who had lived a good life with a large loving family. Besides having a wife in her early 70s who was still active in community affairs, he had a half dozen children by his first and current wife, and several dozen grandchildren.  So he was like the family patriarch, well-loved by the members of his family.  Then, after he found it increasingly difficult to keep up on the golf course, his doctor told him that he had chronic leukemia and had it for two or three years without it being diagnosed.  But now his white blood count was dangerously low, so he was prone to contract and be unable to fight off other illnesses. This condition also contributed to his feeling of low energy and weakness, when he played golf or engaged in other activities.

When I first met with him at the hospital, we discussed the end-of-life concept, and he wanted to make the necessary arrangements to go in peace, including going to a hospice to spend his last days.  He gladly signed the DNR/DNI forms, telling me: “I’m glad you offer this option. I certainly don’t want the end of my life to become a long drawn out process.  I lived a good life.  I feel satisfied at all I accomplished, and I’m proud I can leave a good legacy to my children and grandchildren.”

With that, I thought everything was set, especially since he was sick enough to spend several days in the hospital, due to a serious case of anemia and other blood abnormalities.  So it really seemed like the DNR/DNI status was the right call to reflect his wishes to spend his last days in comfort at a hospice.  In fact, he selected one that was in a peaceful woodland setting by the water.

But soon after that, his regular doctor at the hospital told him that he no longer had leukemia.  The doctor said he had experienced a spontaneous remission. So he cancelled his plans to go to the hospice.  However, even without the leukemia diagnosis, he still had some serious problems, and a few weeks later he was back in the hospital.  This time he had a shortness of breath due to a serious case of pneumonia that had infected both of his lungs.  Eventually despite some treatment, he was gasping for breath again.

Thus, I had another end-of-life discussion with him. He still wanted to keep the DNR/DNI order in place, since he wanted to go quickly and in peace.  Yet, his family wasn’t completely on board with his choice, and he didn’t want to upset them. His wife and daughters wanted him to get whatever treatment he could to stay alive, since people lived so much longer now.

Thus, though he had signed the DNR/DNI status paperwork for the hospital medical team to act one way, his concern with deferring to his family and doing what they wanted suggested the opposite, though he really didn’t want this.  Moreover, neither I nor the medical team recommended this option of going all out to survive as long as possible.  Still, he was in an end-of-life situation requiring us to quickly determine what to do, and a big complication was that he didn’t want to revisit the paperwork he had signed, since he felt caught between his wishes and what his family wanted.

The result was a great deal of back and forth between me, the patient, and the medical team members to decide what to do, as described in At Death’s Door.  For a time, there was a quick reprieve from having to make a decision, when his heart suddenly started beating very quickly, which could lead to a cardiac arrest and death.  But injecting a new medication slowed down his heart, so we were back to deciding what to do about his signed DNR/DNI agreement and the opposite position of his family members.  Fortunately, after still more back and forth with all parties, the issue got decided when Mr. Garfinkle decided he didn’t want to take a particular heart medicine anymore.  “I just want to go home and be with my family for as long as I have left,” he said. Though he was too weak to go home, he agreed to go to a nursing home which had a unit to care for patients needing extra help.

Then, a few days later, he called with his final decision based on his wife persuading him to do what the family wanted.  As he explained: “I need to do whatever I can to stay alive for them.  So I know that’ll mean things will be more painful.  But I decided to do that since my absolute priority is my love for my family.”

Though I thought his choice wasn’t the best outcome for Mr. Garfinkle, we rescinded his DNR/DNI status, because he had the right to do whatever he wanted.  So now he would be full code because that’s what his family wanted, even though medically we would have not recommended this approach.  But in this case, for practical and perhaps political reasons, we decided to abide by the family wishes, since Mr. Garfinkle had decided to defer to them, and after a few weeks, he died anyway, since, as we knew, he had a very serious end-of-life condition.

Dr. Sebastian Sepulveda has had nearly 30 years’ experience as a doctor and professor of medicine, specializing in end of life care.  Since 2005, he has been in private practice, and now deals with private patients and with inpatients at local hospitals who have what appears to be a terminal condition.  His book At Death’s Door and TV series pilot Death’ based on his work will be released in 2017.  His website is at www.atdeathsdoor.com and www.atdeathsdoorbook.com.

In At Death’s Door, I have described what it’s really like to be an end-of-life care doctor.  This is very different than the image presented in the films and on TV.  I was reminded of this in seeing the latest TV series on doctors – among them Heartbeat, about a heart transplant surgeon, The Night Shift, about a doctor who works at night, Mercy, about a nurse back from military stint in Iraq, and Nurse Jackie, about a pill popping nurse.

In these shows, for dramatic effect, doctors often have a major character flaw that contributes to tension, although in reality, doctors present themselves as stoic to others they work with and their patients, and they are hard-working.  Normally, too, in these shows, no end-of-life care doctor or hospitalist deals with dying patients and their families.   Instead, the lead actor, whatever his or her specialty as a doctor, deals with the dying patient.  And usually he or she comforts the family members and informs them of the patient’s status or death.

But there is no extended discussion with the family members about their concerns, and there is never – as far as I can tell – any discussion about how to handle the patient’s treatment.  Rather, when death approaches, the scene generally shows the doctors doing all they can to keep the patient alive.  When they engage in these heroics, there is little or no consideration about whether the patient wishes to be resuscitated or not.  Instead, the usual practice is to keep reviving the patient until the bitter end – and usually it is a bitter end, because the patient keeps suffering and is often in a worse condition due to the resuscitation attempts, only to die a few hours or days later after experiencing unnecessary pain.

Another common scenario is where the patient is rushed on a gurney into the hospital or from a private or semi-private room to the operating theater, where there is a dramatic struggle to save the patient’s life.  Then, the patient often dies on the table, because he or she is too far gone to save.  Or we learn that the patient is going to make it, when the doctor tells the worried family that this is the case.   After that, the next scene is usually of a family member by the patient’s side, until he or she wakes up from the operation or when the patient visits with his or her family members.  But these films generally don’t show what the end-of-life doctor does before or after the operation in working with the patient, family members, nurses, and others in the hospital to ease things for all parties whatever the outcome.

Finally, another common myth perpetrated by these films and TV dramas is that the doctor is a kind of greater than life healer, who is able to save patients.  In reality, though, a patient is more likely to be dying, so the doctor cannot offer a cure, but can at best reduce his or her suffering and pain at the end.  But somehow, where a patient might normally die, the doctor is often able to do the miraculous, much like lead actors who play cops in the TV series almost always get their man or woman at the end to solve the case.

One of the reasons I wrote At Death’s Door is to help present a realistic picture of what end-of-life doctors really do on a day to day basis and counter these mythical creations of doctors who deal with the dying in Hollywood films and TV series.

Dr. Sebastian Sepulveda has had nearly 30 years’ experience as a doctor and professor of medicine, working with patients in a community hospital and personally caring for them, many times as the sole provider of end-of-life care.  Since 2005, he has been in private practice, dealing with private outpatients and with inpatients in hospitals, especially with those who have what appears to be a terminal condition.  His book At Death’s Door and Death’s Door TV series pilot based on his work will be released in 2017.  His website is at www.atdeathsdoor.com.