Brittany Maynard was a young woman who knew she most likely wouldn’t live to see the age of thirty. With advanced carcinomatosis, she was facing an immediate future filled with insufferable pain, a diagnosis that is complicated and actually quite difficult, if not impossible, to treat.

Read Dr. Sepulveda’s article in its entirety on The Doctor Weighs In.

Photo credit, The Doctor Weighs In.

Cardiac arrests have a 100{36b4843c1e91ee13efbe8c3a798c5619926a11e7f2c1b4172ed6d3c5e5f1165f} mortality rate if no resuscitation efforts have been made within the first 10 minutes. American physician, Sebastian Sepulveda, explores the data surrounding sudden cardiac arrest, including the impact of readmission, regional differences and the effects of early initiated CPR.

This article is available in its entirety for subscribers of Journal of Paramedic Practice.

Although primary care doctors or their designees should ideally deal with the end-of-life care for a patient they have been treating for many years, today the patient’s final days are being handled by a palliative care team, whose goal is efficiently handling the patients in these last days.  In my view, this is a wrong direction for the medical system, since this palliative approach makes handling the patient into a less personalized process.  As such, the patient is treated away from home in a hospital or palliative care setting, instead of at home, where the patient should be. 

Rather than this palliative care approach, each patient and  his or her family should be given highly personalized loving care to truly comfort the individual, which I believe is better handled when the patient is at home or cared for by the family doctor.  At the end of life, each person has different needs and concerns, and these can be best handled by a primary care physician or designee, who have had a long-time relationship with the patient or by an end-of-life care doctor who is trained to deal with individual patients and their families.  Only in this way, through individualized treatment and counseling, can the dying patient feel truly cared for and comforted, so he is ready to go when the time comes and the transition from life to death can come about more calmly and peaceably.

As I discuss in my book At Death’s Door, the entire medical system is moving towards this approach of turning end-of-life care to a palliative care team assigned by the hospital.  But in my opinion, that is the wrong direction, because it treats the dying patient as someone to efficiently disposed of rather than someone whose life contributions should be recognized and even celebrated, while he or she is comforted physically. Therefore, anyone caring for a patient in these final days needs to recognize that patients and their families all have different needs and wants, and they have to be treated with deep compassion in these last difficult days.  That’s what the primary care physicians or their designees should do.  They should be the ones to take over the dying process and carry on all the way to the end; or as an alternative, a doctor specializing in end-of-life care should do this, much like priest, minister, or rabbi might be with the patient to provide added comfort in these last days.

To this end, every primary care physician should step forward to be part of the process and participate closely with patient care specialists, in the hospital or in their office or both, as appropriate for a particular patient and family members. Unfortunately, primary care physicians today generally do not appreciate this concept, so they don’t get involved in this final stage of life, while the older generation of doctors who did this are on the brink of retirement.  This situation is unfortunate, because patients typically come to trust their doctors and respect their opinions.  So their doctors can be a major source of comfort for patients in their final days.

Any specialist dealing with patients should stop treating a patient once they see that their treatment won’t work any longer.  So at this point, the patient’s care should fall back to the primary care doctor, because now that treatment is no longer effective and the patient’s condition is terminal, all that is left is the relationship of the patient and primary care doctor.  So this is the time when they can hopefully face the end together, with the doctor providing the patient with his or her care and support – something the patient very much needs at this difficult time.  And what the patient needs most is feeling the support of a caring human being.  

The importance of having a primary care doctor goes back to the beginnings of what is ideally a long-term relationship that begins soon after birth, which is usually handled by a GYN or gynecological doctor.  However, a primary care doctor who is already helping other family members might check in to see how everyone is doing at this time.  Then, as, the child grows up and has a close relationship with a pediatrician, this sets the pattern of having a doctor one knows, likes, and trusts to provide continuing support and care.  Once the individual graduates from school, lives independently, and starts his or her own family, the individual will usually start his or her own relationship with an adult primary care physician, and hopefully establish a many years long relationship.  

In turn, this long relationship with a primary care physician, who may have even been the individual’s parents’ primary care physician, sets the stage for choosing the primary care physician to deal with any end-of-issues, when every life journey gets to an end.  So ideally, at this point, the patient will have a primary care physician to hold his or her hand and provide comfort by telling the patient: “It’s okay.  What you are experiencing now is just one of the points in the cycle of life.”  

While there is no formal end-of-life care specialty yet, so I am not a specialist in this area, the alternative specialty that has been created is the palliative care specialist, made up of doctors who dedicate themselves to consult on end-of-life care.  They do not take primary care patients like I do or perform inpatient care as a hospitalist who primarily cares for these patients. Unfortunately, this specialty has limitations in performing this duty, since these doctors only act in a consulting capacity, rather than providing the ongoing compassionate care that patients and their family need.  Instead, the primary care physicians should be providing this compassionate care, and they need to step up to take over this responsibility to care for their patients at this very difficult time of their life.  They should not abandon the dying to other doctors in the hospital or to outside consultants who are coming in at the very end to give a more mechanical approach to what should be a caring and counseling approach to provide patients and their families with the necessary support and succor in these final days.

The end of life can be a very scary time for the patient, as well as for his or her family.  Patients typically have questions, such as “Now what?” and “What is it going to be like getting there?” They often have questions about “What is going to happen to the people I’m leaving behind?” and “What is my legacy going to be?”

People ask these questions because they are not only scared about the pain they will endure along the way, but they want to feel their life has had a real meaning.  They want to feel that something of themselves will live on not only through the financial well-being they have provided for their family members but through the memories of who they were.  

One form of legacy that patients can leave behind is if they have written notes, journals, or books.  Or a patient who has been an artist or musician can leave behind his or her creative projects, so that can be part of a legacy, too.  In turn, some patients let their families or doctor know that having these concrete things to pass on helps them feel better about their leaving. They have left something physical to their family members or to the larger general public.

But even if a patient doesn’t have anything physical to leave behind at the time, some patients or their families create this now. By doing so, the patient can feel some satisfaction when the project is done that he or she is now ready to go, and such patients may pass on soon after that project is finished.  Or family members may want to create something for the patient as a testimonial to their love and care.  

For example, one daughter created a book of the experiences of her father who was dying from the last stages of Alzheimer’s.  He had been in the army as one of the first African-Americans to become a sergeant during World War II, and afterwards his military career continued for 30 years, before he retired to be a teacher at a local school.  Now that he was dying, his military years mattered the most, and his daughter hoped to capture whatever memories he had left to create a memoir for his life.  Though her father could barely remember anything, he found something satisfying in working on this project, as if this helped to give him a sense of meaning for his life in his last days.

Likewise, a doctor working with an end of life patient and his or her family can help a patient feel a sense of satisfaction and completion in gaining this sense of meaning through counseling with them in these last days.  Creating this relationship goes beyond just providing care and comfort.  Rather it is based on developing a sense of rapport and trust through establishing a close relationship, which requires closely understanding the patient and the family’s wants and needs in this scary time.  

In many cases, this kind of relationship can be developed with the patient’s primary care physician, since this is based on an ongoing and long-term relationship where a closeness and trust has developed over time.  Also, having this primary care relationship is ideal, because a patient who is dying generally looks to a well-established relationship for emotional and spiritual comfort. So generally a patient does not want to initiate a new relationship with a new doctor, which requires providing a new history of the past and explaining again his or her needs and wants for the future.  It can be truly difficult to have to establish a new bond with a complete stranger, especially at this trying time, when life experiences are closing down and the patient is becoming more and more isolated due to a deteriorating physical condition. 

Thus, ideally, it is better for the primary care physician or the designee of that physician to continue work with the patient on any end-of-life issues, apart from any physical care, to make sure the patient is comfortable and free of pain as much as possible. In other words, it is ideal if the primary care physician, even if not a doctor involved in terminal care, to carry on all the way to the end.  This way there is no need for the patient to meet any new doctors or others in a counseling role to assist at the end, and this continuity will help the patient feel more secure.  Moreover, the primary physician can then serve as a liaison between any of the medical or palliative care specialists that the patient may need to see to feel more comfortable in these last days.

Yet, if there is no primary care physician in this role, the end-of-life care physician, whether at the hospital or in private practice, can take over to help the patient, just as the primary physician might do.  The big difference is that the end-of-life care doctor has to take the time to understand the patient and build rapport. Depending on the state of the patient’s condition, the end-of-life care physician can meet with the patient and any family members as a counselor and advisor and explain how he or she is there to help.  Then, the end-of-life-care doctor can spend time listening to what the patient and family members want, determine if there is a match, and if not, look for areas of difference and seek to work out a mutual understanding.  This kind of role takes a great deal of tact, understanding, and reassurance, but by relationship building, the end-of-life care doctor can build this closeness and trust, which is key to providing the patient with the ability to explain what the patient needs now, as well as how he or she hopes to provide a legacy to live on long after he or she is gone.

Alternatively, if the patient simply wants to feel more physically comfortable and wants the assurance that the doctor and medical team will be there until the end, the end-of-life care doctor can provide that reassurance, too.

In short, the end-of-life care doctor’s role is provide that trust and care for the patient and his or her family if the primary care physician isn’t available to do this.  Then, through relationship building with both the patient and his or her family, the end-of-life care doctor is able to provide this care and support, which goes beyond simply providing the best care and comfort that the patient needs and the hospital, hospice, or palliative care facility can’t provide.

Today there is an image of doctors as miracle workers who can use technology to perform miraculous cures on dying patients, so they are returned to a happy and productive life.   Presumably, doctors can access all kinds of new technologies to rejuvenate aging cells, restore functions to deteriorated organs, provide patients with replacement body parts, and more.  The list goes on and on as to what doctors can do.  But many of these ideas come from TV shows and films about doctors who can perform magic, or these dramatic cures are due to technologies of the future.  

By contrast, when it comes down to a patient’s end of life, commonly doctors like myself have to work with patients and their families to help them understand that their condition really is terminal, and they have to adjust to this reality.  As such, besides making the patient’s last days, weeks, or months comfortable, a doctor involved in end of life care has to also be a counselor, therapist, or healer, who helps the patient and family members come to accept and make the best of these final days. 

To achieve these goals, I believe in caring for patients until the end of their days, whether I or one of my coworkers have newly been assigned by the hospital to work with a patient or whether I have worked with the patient as a private client for several years.  In both cases, my role, like that of other doctors caring for terminal patients, is to get to know the patient as an individual and to better understand that patient’s relationship with his or her family and larger social environment.  

This kind of understanding is needed to better relate to and counsel a patient and his or her family, because that kind of understanding contributes to rapport.  This understanding opens the door to better communicating with the patient and family members, because patients are unique individuals with variable levels of education, personal and work relationships, and social surroundings.  They also have different religious beliefs and philosophical approaches to life, and they have a different history of experiences which have helped to shape who they are.  Moreover, their background helps to shape their attitudes towards the end of life and the degree to which they are willing to accept such a diagnosis and the overall medical assessment of their case.  

While many patients do greet a terminal diagnosis ready to fight back, refusing to believe that the end is coming, usually this response makes no difference.  Their condition is generally so far advanced that there is no way to reverse it.  Still, miraculously, this attitude of the fighter does work for a very few patients, who, against incredible odds and a doctor’s assessment of how long they have to live, have an unexpected comeback.  They rally, and their end-of-life condition gets significantly delayed and in a small number of cases disappears.  Even so, for most, any hope for the future is an illusion, and they cannot, despite a valiant struggle, overcome a stark reality of what is.

Thus, much of the role of an end-of-life care doctor is helping a patient understand these odds, so they can fight if they must but then can come to accept what is a final verdict.  At one time, Elizabeth Kubler Ross talked about the five stages of death as denial, anger, bargaining, depression, and acceptance, although they don’t always come in those stages or that order, and not all patients go through every stage.  Thus, one task of the end of life physician is to recognize where a patient and his or her family is at and guide them through the process.

In this classic formulation, in the first stage of denial, the patient believes the diagnosis is somehow mistaken, and they prefer to believe in the reality that they will get better.  That attitude does work for some patients, when they rally and experience a remission or they are able to prolong the dying process, so they can function more successfully and enjoy many of their usual everyday activities for a longer time.  But then, for most patients the reality of deterioration sets in, and they have to recognize the brutal truth.

In the next stage, many patients experience some anger.  They recognize the bitter reality and then wonder “Why me?” or they feel their situation isn’t fair.  They ask “How or why could this happen to me?”  Often they direct this question to God, as they wonder if perhaps this terminal condition is a punishment for something they have done.

After this, in the bargaining phase, patients may go through a negotiation with their God or doctor, seeking an extended life if they reform their lifestyle, such as the COPD patient whose lungs are shutting down from a life of smoking who offers to stop smoking.  But often the damage to their bodies has gone so far that even if they stop their destructive behavior now, there is no going back.  

Then, in Ross’s model, patients go through a period of depression, where they think it’s not worth doing anything more.  They feel they are going to die no matter what they do, so why embrace whatever life they have for the time remaining.  Similarly, their family members may feel depressed if they and the patient have been very close.   Some signs of this attitude are that the patient may become silent, refuse visitors, and spend much of his or her time at home or in the hospital looking very sad and sullen.

Finally, the patient may come to accept the situation. The patient feels he or she can no longer fight the inevitable.  So now it is time to prepare to face whatever comes, whether as a patient or a family member.  Thus, the patient may now take an active part in planning for a funeral, review the highlights of their life, set about closing down their everyday affairs, and prepare to turn over any property and documents to their designated next of kin or trustees of their estate.  Such activities are part of a process of getting ready to go and move on, much like someone who has to leave a house or apartment because they can no longer pay the mortgage or rent, so they have come to face that reality and are ready to go on to the next place to live – or in this case, die peaceably, feeling ready to leave their life behind.

Many end-of-life care doctors are familiar with this Kubler-Ross model and do use it as a guide.  Many patients and families know about this model, too, because it has been so widely discussed in academia and the popular media.  But the stages are not so clear cut, as patients and their families go back and forth about how they feel about the doctor’s determination of the almost certain likelihood of death.  So part of the end-of-life care physician’s role is to assess where the patients and their families are in the acceptance process and to recognize that the patient and family members may not be in the same place at the same time.  So the doctor sometimes needs to work out multiple understandings with patients and family members who have different views about the certainty of the patient’s demise and what to do as this period of acceptance goes on.

As an end of life care doctor, like other such doctors, I try to help guide the patients and their families through the process, so in the end they can be calm, peaceful, and accepting in facing the patient’s death.  This way they can experience as much peace and contentment in these final days until the inevitable death occurs.  

Yet, even after death, much healing remains for family members after the patient has died.  So like many of doctors dealing with terminal patients, I personally meet with family members to discuss what has occurred and how the family has adjusted or needs to make future adjustments.  I find the meetings cathartic and extremely valuable to bring closure, and I find it very satisfying to do this.  This is not what the hospital employees or palliative care team members do, because usually, once the patient has died, all contact with the family is lost and there is no follow-up.  But I feel this follow-up is extremely important, so the family members can experience a peaceful closure after the death of a loved one.

At one time, the end of life was very clear.  People died of an illness, injury, or just of old age, when their organs critical for functioning gave out, and usually they died at home with their family, relatives, and very close friends gathered around them.  Then, they stopped breathing and their heart stopped, and within a few minutes, they lost consciousness and died.

But in the last few decades, the growing medical technologies that sustain a dying patient, except in the event of a serious accident or fatal illness that brings death quickly, raise the question – at what point is a patient really dead?

As an end-of-life care doctor, I am involved when patients have a terminal condition and are towards the end of the dying process.  So my role is to help ease the way for these patients, and in some cases for their families, to make some end of life choices about their care.  That typically involves encouraging them to sign a DNR/DNI – do not resuscitate/do not intubate order – which means that the medical team, usually at the hospital, will not attempt to revive them, once they have suffered from a cardiac arrest or ceased breathing to avoid exposing them to unnecessarily pain and trauma at the end.  Instead, the goal is to not provide any treatment, only pain relief, at the end to ease their passing.  

Usually that death after the heart or breathing stops occurs within a few minutes, although there have been some rare cases of patients somehow healing and going on to live a few more years.  But I am not always present at the actual moment of a patient’s actual death, though I commonly deal with comforting the patient’s after the fact, just as I help in caring for the patient in the hours, days, and weeks leading up to his or her death.

Thus, as I have seen in my own practice, the question of when death comes can be uncertain in light of the new medical technologies for prolonging life, and this determination of death has many practical implications for a family and society as a whole.  For example, once a person is declared officially dead and a death certificate is issued, there are legal implications for distributing the person’s personal property and business holdings, based on whether there is a will or not.  Also, there may be certain practices based on the patient’s or family’s religion and culture for recognizing that person’s death and past life and for determining what to do with the patient’s body, from various burial practices to cremation.  Then, too, certain policies may govern organ donation, assuming the patient or family making the decision has agreed to this, once the person is biologically dead, although perhaps not clinically dead, since the person’s heart may be kept pumping and breathing may continue to function by artificial means.  This can be the case, because the medical standard for determining death is based on brain death, which is different from a person being in a vegetative coma, where there is still some low-level brain activity.  

But in a brain death, all brain functioning has ceased, so there is “total brain failure,” as Dr. Alan Rubenstein, a senior consultant to the President’s Council on Bioethics back in 2009 wrote in an article “What and When Is Death?” published in The New Atlantis in that year.  In such a case, even though the person’s heart can be kept beating and a ventilator can keep that person breathing, he is essentially a “heart-beating cadaver.”  This is because all consciousness, everything that makes a person a person, is gone.  As Rubenstein describes it, a patient with total brain failure is “in an eyes-closed coma twenty-four hours a day.  He shows no sensitivity to pain and, on examination by a neurologist, exhibits no reflex responses that would indicate even the simplest brain function.  He makes no effort whatsoever to breathe on his own.  If the ventilator were removed, his cells and tissues would, in a very short time, shut down. In stillness, the body as a whole would come to look like a familiar corpse.”

Legally, this brain-dead state is considered death – a legal definition that has been established for decades.  In fact, all 50 states adhere to the guidelines which are endorsed by the American Medical Association and American Bar Association.  They agree that brain death is death, even if the heart and breathing functions continue – a definition that has certainly proved useful in providing organs for the living.  For example, according to Rubenstein, in 2007, over 28,000 organs were taken from about 8000 deceased donors, and about 90{36b4843c1e91ee13efbe8c3a798c5619926a11e7f2c1b4172ed6d3c5e5f1165f} of them were pronounced dead and their organs removed before the ventilator was removed and their heart stopped beating.

Such brain death can occur for a number of reasons – trauma to the brain, such as due to a severe head injury, a stroke or aneurysm, a brain tumor, or a lack of blood flow or oxygen to the brain, such as due to drowning or a heart attack.  Whatever the reason, this is the way the person is considered to have died. By contrast, someone in a coma or persistent vegetative state still has some brain stem function which controls breathing and possibly some other brain function, so he or she isn’t dead – and could still experience healing. But brain death is irreversible. The person is considered dead, and this is the time that doctors indicate on the patient’s death certificate.  Though the person may be on mechanical support, such a breathing machine, that keeps oxygen going to the organs until they can be recovered to be transplanted into another patient, the patient is not being kept alive.  He or she is considered medically dead.

But are all of these patients considered brain dead actually dead?  And should brain death be the standard for determining death?  That standard is now being challenged today.

One challenge is from families who are caught in the middle between the legal definitions and their personal beliefs, including their religious convictions. For example, the family of Jahi McMath in California has sought to reverse her death certificate, after she was declared brain dead in January 2014.  Though the hospital wanted to disconnect her from ventilators, her mother, a devout Christian, believed Jahi was still alive, begged the hospital not to disconnect her, and eventually got Jahi released to her care.  Since then, her mother has noticed what she thinks are signs that Jahi is responding to words with bodily movements, and she has petitioned the California courts to reverse the brain dead determination.  In turn, should Jahi still be deemed to be alive that will increase the insurance payments for her medical care.

In a Texas case, Marlise Munoz was found unconscious at her home in November 2013, possibly due to a blood clot, and she was rushed to the hospital.  Though she had previous conversations with her husband, telling him that she did not want to remain connected to machines, she was pregnant.  As a result, the hospital, guided by Texas law, refused to take her off life support, since the law prohibits withdrawing or withholding life-sustaining treatment from a pregnant patient, no matter what she wishes. After the husband sued in January 2014, a judge finally ordered her to be removed from the machines and allowed to die, and the 23 week old fetus was not delivered.

These cases raise all kinds of questions about when a patient is dead and what laws should prevail when a patient is brain dead, but their body can still be kept alive.  Then there is the question of whether a person who is seemingly brain dead might still be revived, as a result of some near death experience cases.  As described by Michael Inbar in “New Study, What Really Happens When You Die” in Today magazine on September 28, 2009, Dr. Sam Parnia of Weill Cornell Medical Center, author of What Happens When We Die and leader of the AWARE (Awareness During Resuscitation) study, found that some people who were resuscitated after nearly dying reported having a near death experience.  Though their brains had gone into a flatline state, so presumably they shouldn’t be conscious, the doctors were able to get blood back into their brains.  When they became conscious again, about 10 to 20{36b4843c1e91ee13efbe8c3a798c5619926a11e7f2c1b4172ed6d3c5e5f1165f} of them reported that they had some consciousness present.  For example, some reported seeing the doctors and nurses working on them, as if they were looking on from above.  Some reported seeing lights and singing, as if they had gone to heaven.

In another study, reported in the Telegraph by Sarah Knapton on October 7, 2014, scientists at the University of Southampton spent four years examining more than 2000 people who suffered cardiac arrests at 15 hospitals in the UK, United States, and Austria.  They found that nearly 40{36b4843c1e91ee13efbe8c3a798c5619926a11e7f2c1b4172ed6d3c5e5f1165f} of these people who survived – 330 out of 2060 patients — described some kind of awareness when they were deemed clinically dead before their hearts were restarted.  Most notably they saw the medical staff working on reviving them.  Others recalled seeing a bright light, such as the sun shining, being dragged through the water, or being separated from their bodies.

Such cases raise questions about what is death?  And as medical technology improves, can the dying process be extended or even reversed?  

At this point, I don’t know, though these cases and research raise some issues for thought, and they could result in legal changes over how we define death.  These cases could also affect what I and other end-of-life care doctors do in treating terminal patients and their families in their last months of life.  

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.