Stories about end of life situations I encountered during a 32 year practice in Pulmonary/Critical Care Medicine. I try to point out the ethical issues, stresses, successes and failures. There are literature citations but this is a personal, hopefully educational exercise. Please comment!
There’s lots of talk about having “the conversation” with loved ones and warnings about being enmeshed in the medical-industrial complex as we are dying. As Atul Gawande put it in Being Mortal, “Lacking a coherent view of how people might live successfully all the way to their very end, we have allowed our fates to be controlled by the imperatives of medicine, technology, and strangers.”
“Last year, thirteen per cent of the Belgians who were euthanized did
not have a terminal condition, and roughly three per cent suffered from
psychiatric disorders. In Flanders, where the dominant language is
Dutch, euthanasia accounts for nearly five per cent of all deaths.” (In
Washington and Oregon it is 0.2% of all deaths.) Some physicians who
actively support euthanasia have concerns about “the cowboys” who push
the limits on accepting patients who are not terminal, but find life unacceptable for whatever reason. They see no difference between helping
patients who are actively dying and helping a non-terminal
patient die. These controversial physicians feel that if a patient wants
to die, then they support their autonomy. Anything else is
paternalism! Has the slippery slope begun?
The patient was wheeled into the amphitheater classroom in
front of 125 medical students. Francis Wood Sr, the graying Chief of
Medicine was holding forth for us that day. “Students today I’m going
to show you a very interesting case.”
Then he paused as if collecting his thoughts. “Now I’ve just made two mistakes in introducing Mrs. Ellison. What were they?
We sat there not having any idea what he was talking about. We had
been immersed in pathology, disease, physical exams, and seeing
patients. Dr. Wood said, “Well, first of all I
introduced Mrs. Ellison as a case. What’s wrong with that? I don’t
think she wants to be a ‘case’ but really thinks of herself as a
person. We need to respect the fact she’s a person with a disease – not
just a disease we happen to be interested in. Secondly, when I identified her as ‘interesting’, I wasn’t really
talking about her, but about her disease. In a sense I was allying
myself with the disease against the patient!”
Dr. Wood was the person who led me to choose Internal Medicine for
residency training. I hoped to learn about people, the human condition
and what can go right or wrong in the spans of our lives. My Dad was my other mentor. An old-style GP he had a small office,
delivered babies, gave ether anesthesia, did minor surgery, etc. He
knew families and they knew him. He knew he was aging when he was
delivering the next generation of babies. “Jim, get to know the
families, what they do, what they value, and try to gain their trust.”
But something’s happened in our rush to modernize care with new
“efficiencies.” For example: every Tuesday, in “hospital X” your
doctor changes – a new Hospitalist takes over. They review the records
as they inherit 12-15 new patients. Their job is to speedily move you
through the hospital and off to Skilled Nursing or home or some other
venue such as an Adult Family Home. There’s a name for this: “Transfer
Trauma”. We have more technology, but less continuity. We must ask,
“does anyone really know me, know my family, understand my fears and
hopes?” Perhaps some can afford a “concierge doctor” as a bridge, but
it’s no solution for most folks. Hopefully, we will have loved ones to
be strong advocates and fill in some of the gaps. We need to be a
person, not an “interesting case.”
Are you familiar with resident rights in nursing homes, adult family homes, and assisted living facilities? There is extensive Washington state law addressing rights.
Here are a few for you (or via your power of attorney, or guardian). Unfortunately the law in some states is not as robust in terms of protecting resident rights.
Safe, clean, comfortable and home like environment
Notice of rights, rules, and policies
Fees & notice disclosure
Approving your plan of care
Privacy and confidentiality
Rights pertaining to transfer/discharge
Grievances are addressed
Control over funds/financial affairs
Protection from chemical/physical restraints
Personal property protection
Privacy for mail (arrives unopened) and phone calls
Privacy for visits
You do not have to sign waivers that release the facility of liability for losses of personal property or injury
Although most people would like their final days at home, many die in hospitals or nursing homes. Society needs to be responsible so that we may have protections for personal dignity and also have strong advocates for us. We actually gain many rights when in long term care, but often aren't informed.
As technology advances, we are faced with multiple ethical challenges that were unthinkable in the past. In 1962 a new era of lifesaving began. The first outpatient kidney dialysis clinic was started by Dr. Belding Scribner in Seattle. Suddenly there was a lot of demand for treatment but very limited facilities. Ethics Committees were formed to struggle with allocation of scarce resources - labeled "God Squads" by residents.
Dialysis wasn't an ideal long-term solution. Subsequently, organ transplantation became available - but again there is a shortage of kidney, hearts, lungs, livers, etc. Many folks die while on the waiting list. Living donors are sometimes available but the number of organs for transplant still falls far short.
A recent article about brain death and imminent death was published, where a patient with ALS wanted to donate organs when he was at the point of imminent death - not waiting until brain death when organs are less viable. It's an interesting, difficult, and sad dilemma to know the right answer. Is it "do no harm"? Or respect a patient's autonomy when dying? Or protecting a hospital's statistics? Hopefully, there will be a way to address the needs - and to focus on saving lives.
It's hard to believe that I was never really taught about how to control pain when I was in medical training. Well that's not quite true. I was told to avoid getting patients "hooked" on narcotics and this was certainly drilled into nurse training also. We learned about disease and disease processes, but not about a holistic view of the patient in their social milieu.
Partly because of this, and our funding mechanisms, medicare and insurance companies organized to pay for disease care - especially procedures. Procedures are easy to count and easier to control than "soft" care such as a doctor spending 30 minutes trying to sort out a confusing medical condition. The "procedure based" specialists like radiologists, orthopedists, ophthamologists, gastroenterologists, and cardiologists do disproportionately well historically playing by established reimbursement rules, even though the procedures may be over-utilized. Costs soar.
Finally we're beginning to look at global costs related to uncoordinated care, poverty, cultural barriers, etc. The Institute of Medicine (IOM) has a key report on "Dying in America". This report from the Center to Advance Palliative Care highlights the current changes in health care delivery under Medicare and Obamacare. It's a must read. The needed changes appear to be gaining traction.
When someone asked a philosopher how he would like to die he replied, "When I least expect it." Woody Allen in a similar vein stated, "I'm not afraid of dying, I just don't want to be there when it happens."
Although we all may have similar wishes, we are vastly more likely to age slowly, acquire a few chronic conditions, have periodic illnesses with declining health, and then have some kind of "terminal event." So most of us have time to think about a "good death", but what does that really mean?
There was a recent piece in the New York Times written by a knowledgeable woman, whose father didn't die the way he wanted to - no heroic interventions at the end. He had a sudden cardiac arrest with subsequent cardiac resuscitation and invasive ICU care. Once the CPR was initiated it was unclear at to whether her father would survive. To me it demonstrates that all situations can't be anticipated and that often families need to sit down with the medical team participating in shared decision making.
So what is a good death? I was asked this question by our local NPR radio station. After talking to many patients over the years, the following seems most important to have our own wishes adhered to:
Pain and symptom management - palliative care consultation and hospice are often needed
Preparation for death – spiritual & natural - advance directives - POLST if indicated.
Completion of goals - each individual has his/her own wishes
Contributing to others – a legacy
peace surrounded by loved ones - most people wish for a home or home-like death. The ICU isn't a peaceful place
necessarily, but at times I've felt a spiritual connection when tubes
are removed, monitors turned off, and the family holding and talking
quietly to their loved one at the end.
Ezekiel Emanuel wrote an article for the Atlantic on "Why I Hope to Die at 75 - An argument that society and families—and you—will be better off if nature takes its course swiftly and promptly." As an Oncologist and Ethicist, he says he speaks for himself but implies not so subtlety that it may be best to avoid the consequences of aging and declining health (which probably really begins around age 25). For himself he would not want any medical tests or therapeutics after age 75. He argues that the productive years of life are over, that accomplishments should be complete, and that prolonging aging and its consequences is something he wishes to avoid.
Recently, I gave a talk called "Your Life Your Choices" to a couple of life-care communities where the average age was near 80 and most were still in independent living. Many had lost their spouses and most, by definition, had some degree of declining health. Sounds depressing doesn't it? Yet these folks were active - in their faith groups, with their grandchildren, swimming, singing, playing and performing in bands or quartets, line dancing, playing tennis (a few), golf, and enjoying each others company. There was keen recognition and understanding about end-of-life issues. Many had POLST forms saying they would never want CPR, but they would accept removing an appendix, taking an antibiotic, and even a new knee or hip.
I showed these groups a video of CPR, and talked for about 90 minutes about having "the conversation" with loved ones, designating a durable power of attorney for health care, etc. It seems that Emanuel wants to shock us into accepting that we need to face up to the declining years and make plans so I discussed Emanuel's proposal in these groups. None of them felt they should have died 5 years ago!
Emanuel states that his family disagrees with his wishes. I hope he can find someone to follow them and respect his autonomy. But what if he comes in with an infected hangnail with an ascending infection threatening his life with septicemia. At age 74 take an antibiotic, but decline at 75?
So I think I get his over-exaggerated point that we need to think carefully about prolonging the dying process when we are at an end. But, with due respect, I think his ethics are flawed. He is discounting the delight of being old and still functional. Yes, we won't win a Nobel Prize. But how about the joy of attending a grandchild's concert, going up to the lake cabin once more with the family, traveling together to Alaska, singing old favorites, volunteering at the food bank or library, or going to the opera. Ezekiel, there is no age cutoff for enjoying family, friends, and the pleasures of life. Even though you say you don't support "death with dignity", you are basically proposing that for yourself when you would even decline taking an antibiotic after age 75.
As we die, we leave a legacy for those we leave behind. Ethical wills, sharing our values, showing love, and supporting our loved ones - yes, even as our spouses age. There's nothing wrong with a cane, a walker, or a wheelchair - enjoyable life can still be there for many of us. There can be growth in our spiritual life and new-found loves even as we experience loss. The old saying "getting old isn't for sissies" rings true because aging does have its trials. Personally I think rekindling an old forgotten friendship is more important, and perhaps as satisfying, compared to your climb of Mt. Kilimanjaro.
At age 76, as I write this, I think your ethical view of aging is at best cloudy and seems based on fear of loss rather than autonomy. Yes, there are problems of cost, resources, and "getting out of the way" for the next generation. But with my new corneas, I can drive safely again. I love playing tennis doubles with my 80 year old friends twice a week. Should I have resigned to go blind at 75? At your healthy age of 58 Ezekiel, you seem to have a peculiar disconnect with those aging and declining in health. So please re-write your article at age 74!
Just today I attended the Washington State End of Life Coalition
annual meeting where there is always a lot of sharing of stories.
Phyllis Shacter from Bellingham gave a very moving account of her
husband's onset of Alzheimer's and how he ultimately decided the path of
VSED while he was still mentally competent. Here's a link to her
TEDxBellington Talk: http://www.youtube.com/watch?v=tiYPaU3h3w8
Brittany Maynard has passed from this life. This brave but unfortunate 29 year old woman with incurable progressive brain cancer drew public attention by choosing to go public with her choice about end of life care.
"Brittany suffered increasingly
frequent and longer seizures, severe head and neck pain, and stroke-like
symptoms," according to a statement Sunday night from Sean Crowley,
spokesman for Compassion & Choices, a national nonprofit working to
expand end-of-life options. "As symptoms grew more
severe, she chose to abbreviate the dying process by taking the
aid-in-dying medication she had received months ago. This choice is
authorized under the Oregon Death With Dignity Act. She died as she
intended — peacefully in her bedroom, in the arms of her loved ones,"
the statement said.
Her decision to post a video and promote dialogue is stimulating an important conversation. Brittany did not want to die and felt that the term suicide did not ring true in her case. She did not want to suffer. As the end approached she wanted to be able to die on her own terms. In the comments to this article, many supported Brittany but a few felt that dying should not be by "assisted suicide". Indeed, with good palliative and hospice care, "death with dignity" is relatively rare even in the states where it is legal - Oregon, Washington, Vermont, and Montana. About 1 in 500 deaths are by self ingestion of prescribed lethal drugs.
The fears of the "slippery slope" leading to wider use or abuse have not materialized, but these fears are not unfounded. I'm a little surprised that Oregon does not keep track of the "tourists" who come to their state for "death with dignity". It's important to be transparent here. Some critics fear the "culture of death" to such an extent that they oppose the POLST form and continue to promote the irrational fear of government sponsored "Death Panels".
To me the positive aspects of a case like Brittany's are not only the battle over "death with dignity". Rather, it's a flash point to get us talking about the inevitable fact that we are all going to die. In this conversation, we need to talk about our values, hopes, and fears. Most importantly we need to appoint a person as our Durable Power of Attorney for Health Care, because there's a 50% chance we will be too sick to participate in the discussion about our wishes when we are near life's end.
In a recent op-ed piece in the New York Times, it's noted that access to morphine is quite limited in the poorer countries: "As with all successful human rights movements, we need to put a face on
the injustice of untreated cancer pain. Witnessing a clinic full of poor
children with advanced cancer, crying in agony, should convince anyone
that access to morphine is a human right."
Palliative Care as a specialty is a relatively recent innovation in the USA. More attention is now being paid to end-of-life situations, the access to palliative care even in the USA varies widely. Morphine costs just pennies, but the concerns over narcotic abuse has limited its use worldwide. I remember doctors and nurses not wanting to give too much over fear of addiction. I'd say, "Look, the patient is dying and suffering. Do you really think addiction to morphine is a concern?"
Careful titration of morphine at the end of life is a blessing. It reduces pain and shortness of breath plus it produces calm and even euphoria thereby improving the quality of life in life's final days. It's time to heed the call. Let's continue to promote the appropriate use of morphine world wide. It's inexpensive and doable. It's not only the right thing to do, it's a human right.
A recent editorial in the New York Times discusses just how broken and difficult to navigate our "system" of health care can become. Do we have the ability to improve? Yes, but not without a lot of changes which are recommended in the Institute of Medicine's report.
How skilled is the medical provider in having the conversation? What kind materials are shared? Videos? Pamphlets? Web sites? What's the follow up? Are the loved ones involved? And, most importantly, does completion of the documents really affect end of life care. We only die once so we get no practice at this or being a critically
ill patient. So how will we really understand the choices and make sure they
Respecting Choices has attacked the problem successfully and systematically and should be a guiding force showing us how to do advance care planning in an effective programmatic fashion. On the home front, I've been involved in presenting programs in the community called "Your Life Your Choices". This program lasts 90 minutes and is well received but only scratches the surface of the complex choices.
A single reimbursable visit for an end-of-life discussion is a good place to start - but much more is needed in order to have an organized way to provide the care that the patient understands and truly wants. There are technology drivers in medicine that can put a lot of us the ICU on life support. The conversation and the directives can help, but often aren't definitive.
So it is beneficial to pay doctors to have this 15 minute discussion and have documentation of the patient's wishes carried out. But we need to avoid a hasty and mechanistic way of doing this. The conversation is never easy, straightforward, or simple. Lots of clarification and questions need to be addressed. The systems like Respecting Choices (above) address this well.
As I grow older, I find it so refreshing to be around my grandchildren. It's their idealism mixed with innocence and craziness that attracts me and carries me back many years. Also, I find it exciting and pleasing when my contemporaries "act young" - being willing to overlook their health complaints, to try new adventures, to volunteer, to connect with others, to sing and to dance.
He died peacefully on January 27, 2014, at the age of 94. He was chopping wood until 10 days before his death. According to Wikipedia, "When asked about his religious or spiritual views, Seeger replied: 'I
feel most spiritual when I’m out in the woods. I feel part of nature.
Or looking up at the stars. [I used to say] I was an atheist. Now I
say, it’s all according to your definition of God. According to my
definition of God, I’m not an atheist. Because I think God is
everything. Whenever I open my eyes I’m looking at God. Whenever I’m
listening to something I’m listening to God.'"
May Pete's charm, enthusiasm, and music keep us all forever young.
I was taught in medical school (some 50 years ago) that doctors had a special duty to protect the patient. That seemed self evident and logical. "Do no harm" was a first principle dating back to Hippocrates. However the teaching I received extended the concept to also protect the patient from bad news, and to make "the right" decision for them - not necessarily including them in the conversation or decision making because "it would be too hard on them.".
"Students, you should never tell a patient of the diagnosis of cancer", pontificated our chief of surgery. "You should protect them and not give them a fatal diagnosis. Do not tell them that the cancer has progressed, but do let a trusted family member know."
Mary, at age 77, fell and was admitted to the hospital with a hip fracture and had surgery the following day. Post-operatively she received narcotics for moderate pain. Unfortunately she had vomiting and retching, then developed severe abdominal pain. She had a history of a prior appendectomy, prior gall bladder removal, moderate COPD, and mild heart failure.
Accompanying the pain, her blood pressure fell, she became short of breath, and her oxygen levels fell. This rapidly progressed. Cultures were taken for infection, a chest X-Ray done, and antibiotics initiated. Her kidneys began to malfunction and early signs of shock were present.
Her doctors thought of aspiration pneumonia, esophagitis, a dissecting aneurysm, heart attack, pneumonia, and pulmonary embolism - but were on the wrong track. The X-Ray should have helped but was interpreted as not showing free air around the lungs or in the soft tissues. A subsequent CT scan however, did show an abnormal collection of air in these areas.
Finally after 18 hours of going down the wrong path, a diagnosis of a ruptured esophagus was considered. This was confirmed by putting some contrast dye down the esophagus showing it to leak into the surrounding tissues. Also, an enzyme only present in saliva was present in the fluid from around the lung.
She was taken to surgery for repair 24 hours after presenting with pain, at a time when the mortality begins to approach 50 - 75%. Unfortunately she continued to deteriorate and ultimately was placed on comfort care prior to dying.
Comment: Herman Boerhaave was a brilliant Dutch physician, botanist, and humanist who, in 1724, described a corpulent patient's proclivity toward self-inducted vomiting in allow him to indulge in further overeating. At autopsy his patient, Baron Jan Van Wassenaer, had olive oil and roast duck flesh outside an esophageal tear. The condition known as Boerhaave's Syndrome is relatively rare but one of those bits of knowledge that needs to be in the thinking of surgeons and critical care physicians. Unfortunately a delay in diagnosis of 24 hours leads to a very high mortality. Samuel Johnson has written an interesting biography of Boerhaave.
Agnes was out shopping at her local corner store. At age 82 her body was beginning to show typical signs of aging. She had survived breast cancer surgery, a hip replacement, and cataract surgery. Her doctors told her she had osteoporosis and low Vitamin D. She took medications for her hypertension, cholesterol, and osteoporosis. Her spine had begun to curve and her gait was a few steps slower. Yet, with her shopping cart she still enjoyed her trips to the store. Her best friend had suffered a cardiac arrest recently and didn't survive the hospital stay. She discussed this with her retirement home personnel and decided she never would want CPR. A "Do-Not-Resuscitate" order was initiated by completing a POLST form (Physician's Order for Life Sustaining Treatment). She made copies of the POLST form giving them to her physician and retirement home staff.
While at the corner store, Agnes felt light headed and sat for a moment but then slumped to the floor. Shoppers at the store immediately started CPR and 911 summoned the Medics. With the standard 1.5 to 2" compressions of the sternum, multiple ribs were broken and the lungs were later found to be punctured. Her heart rhythm was "shockable" and after 5 shocks, she stabilized and was taken to a nearby ICU. The next few days were stormy both medically and ethically. The hospital staff felt they had preserved a life, yet the family said she was ready to "pass on" and didn't want the heroic life support. Finally the family and POLST form wishes prevailed and she was "allowed" to die in the ICU after the tubes were removed.
Yet all of us are "signed up" for CPR, unless there's a really clear way to avoid it. Some families simply don't call 911, some have POLST forms, or some spouses and caregivers are able intercept the process by demonstrating they have power of attorney for health care. The American Bar Association has come up with a smart phone app to store advance directives and other medical data which might be helpful to the techie generation. Some states have free registries and there is a fee based national registry for advance care documents, but finding these can be difficult in the acute situation. The frustrating bottom line for the "frail elderly" is that very few of us have had an informed consent discussion about the pros and cons of CPR. And even if we decide, "Heck, I'd never want anything like that", a lot can still go wrong in terms of knowing and respecting our wishes. Even a "No Code" tattoo on your chest isn't legally binding! So in addition to having "the conversation" with your doctor and loved ones, try to come up with a plan if you really want to avoid CPR. One thought is to electronically store any POLST/DNR orders with 911 responders. That way, when they are summoned, the orders will be immediately available. This may a concept worth field testing.
When I entered the room, my patient was surrounded by worried family. They had lots of questions. My concern was that I didn't know either the patient or family. Dan had been brought to the ICU after a cardiac arrest outside the hospital. The medics had gotten the heart restarted with CPR and shocks, but Dan was unconscious and on a ventilator. So how to begin?
I introduced myself and explained that I needed to examine Dan and get more information from the family, then we would see what else we needed to do. The anxiety was palpable. He was soon to also be seen by the neurologist. The cardiologist felt that his heart was "stable" and that he had had an arrhythmia, not a heart attack.
A son from Minneapolis was calling in. The two other children at the bedside and Sam's wife, Marilynne, were in tears.
So how do I proceed from here? The medical evaluations were pretty straight forward. But communicating with the family is something I only learned over time.
Family conferences and decision making with the medical providers occurs daily in the ICU, but the effectiveness varies widely. A medical social worker and I developed a shared decision making pathway for medical providers to use. One of the steps in the process is the concept of forming a moral community.
We would invite the family to meet in a quiet place, have a telephone/speaker for those unable to be there, and go around the room introducing ourselves. The moral community concept is much like what goes on in an ethics committee discussion. The discussion centers around the patient's wishes and values respecting the patient's autonomy. The community of caregivers (medical and family) begins to form around those values and wishes. Caring, empathy and sharing are all key to begin to have the group act functionally as a moral community. Modeling of these behaviors at times helps deal with the anger and frustration often present.
Dan's family was devastated that he suffered irreversible brain death following his cardiac arrest. Using shared decision making they agreed with removal of life support. Allowing transparency, showing caring, focusing on Dan's wishes and values - all of these gave the family a sense that they were doing the right thing.
Susan was 76 and dying at home in the days before Hospice and before the use of the POLST form. A neighbor came in the relieve Susan's daughter who went to the store. Suddenly Susan stopped breathing and the neighbor called 911. The medics came and, not having instructions to the contrary, did CPR and brought her to our ER unconscious and intubated. The ER physician called me in the ICU saying, "We got a sad situation here. He explained what happened and that the daughter, who finally found Mom in the ER, was distraught saying, "None of this should have happened."
We let the patient die in the ER, had social service work with the family. The medics were upset that they'd performed CPR ("medical last rites") in such a patient. The ER wasn't pleased to have a patient die there but a hospital admission seemed pointless.
The POLST (Physician's Orders for Life Sustaining Treatment) was pioneered in Oregon in 1991 and has gradually worked its way state by state so that about 26 states now have a POLST statute. It has been validated in Oregon to be effective in honoring a patient's wishes. The medics I have worked with have praised the POLST form because it tells them exactly what to do, or not do, if they are called and the form is available.
The POLST is most commonly advocated for those expected to die within a year or the very frail elderly. The form translates the patient's values and wishes into actual medical orders which will be honored by 911 responders. In Washington the form must be signed by the patient (or surrogate) and the medical provider.
But it's not without controversy and the criticism sounds much like the fear over Death Panels which has, gratefully, died away. Conservative Catholic bishops in Wisconsin and a few media sites have warned of the dire consequences of POLST forms. Their criticism implies that they are Do Not Resuscitate forms that also withhold antibiotics, fluids and nutrition. Actually the forms do allow for a wide range of choices from full care, limited care, or comfort care. They are intended to put the patient's wishes into real time medical orders. They can be revoked by the patient or surrogate if circumstances change.
Probably the most common site for the use of the POLST is with Hospice patients, who are expected to die within six months. But there is a tendency now to use (or even try to require) the use of the POLST form in retirement community facilities and nursing homes. Recently I gave a talk about advance care planning to a well known retirement community in Seattle. "How many of you have completed your Living Will and Power of Attorney for Health Care?", I asked. 80 or 80 responded positively. But the surprise was that 70 of 80 had completed POLST forms. These were folks probably from their mid seventies up into the 90's but all were in independent living (no assisted living, etc.). To me this is a surprising use of the POLST form and goes beyond its initial intention. Do all of the 75 year olds really know their wishes about a ventilator for pneumonia, or CPR, etc? Of course the POLST form can say, "Do Everything" but then it becomes redundant. Also, in a practical sense how is the POLST form going to be reviewed or retrieved if the patient is in the dining room or gym or out shopping? Registries can be tried but real-time access is needed in the acute situation for the POLST to prevent unwanted CPR (hence bright color is used so the medics can spot it). However, some aging rather healthy folks seem sure that they do not want CPR in any circumstances.
At a talk I gave yesterday in California, a couple showed me the bracelets they were wearing that referred to their completed POLST form. He was in his 80's and she was a hospice chaplain in her early 70's. I asked her, "How can you really be sure that you'd not ever want CPR?" She responded, "I just don't like the odds. I'd rather pass on tha than risk severe brain damage. I've had a pleasant life, and a cardiac arrest wouldn't be a bad way to die, ever though their might be a 25% chance of getting me back to my normal self with CPR." So this use of POLST may have this practical use in certain well informed folks who are sure of their choices, but it seems ill adapted for this. Will the 911 responders really see their medic alert bracelets and will they really have time to find, thus honor, the POLST?
Even with this latter concern of mine, the benefit of the POLST is huge. Recently, the American Medical Directors Association indorsed the POLST, But becoming mainstream in our rather broken heath care "system" in the USA will require more time for the POLST. We can only hope that the remaining states can learn from the pioneering efforts in Oregon. It indeed honors patient autonomy and choice. And the states where the POLST is currently used, should have oversight and guidelines for appropriate use.
When I was in medical school, our nutrition researchers taught us that vitamins didn't do much good and only made expensive urine (where the water soluble ones end up). We did learn about the classic vitamin deficiencies like scurvy, beriberi, rickets, etc. But the evidence that healthy people should take vitamins was marginal at best. Is our search for immortality the reason that we turn to the pill or potion? Do we continue to look for the fountain of youth that is linked to the Spanish explorer Juan Ponce de Leon. (Though de Leon was really looking for the isle of Bimini rather than Florida and there's no mention historically that he was searching for perpetual youth.) Yet the myth and tourist site remain popular.
So why do we turn to vitamins, supplements, anti-oxidants, nutriments, etc? William Osler commented that “the desire to take medicine is perhaps the greatest feature which distinguishes man from animals.” Also Osler taught his medical students, "One
of the first duties of the physician is to educate the masses not to take
Osler's concerns have been valid over the years, but often have been drowned out by errant science and the hype of the vitamin and supplement industry.
There have been prominent scientists who have been strong proponents of vitamins and supplements. Linus Pauling discovered the structure of ascorbic acid (vitamin C) and won the Nobel Prize in Chemistry. Unfortunately he became a "true believer" in vitamin C and other vitamins: "Pauling is largely
responsible for the widespread misbelief that high doses of vitamin C are
effective against colds and other illnesses. In 1968, he postulated that
people's needs for vitamins and other nutrients vary markedly and that to
maintain good health, many people need amounts of nutrients much greater than
the Recommended Dietary Allowances (RDAs). And he speculated that megadoses of
certain vitamins and minerals might well be the treatment of choice for some
forms of mental illness. He termed this approach "orthomolecular,"
meaning "right molecule." After that, he steadily expanded the list
of illnesses he believed could be influenced by "orthomolecular"
therapy and the number of nutrients suitable for such use. No responsible
medical or nutrition scientists share these views."
The bottom line is that vitamin and mineral supplements for healthy individuals don't work and some may be harmful. The editorial in the same issue concludes: "β-carotene,
vitamin E, and possibly high doses of vitamin A supplements are
harmful. Other antioxidants, folic acid and B vitamins, and multivitamin
and mineral supplements are ineffective for preventing mortality or
morbidity due to major chronic diseases. Although available evidence
does not rule out small benefits or harms or large benefits or harms in a
small subgroup of the population, we believe that the case is closed—
supplementing the diet of well-nourished adults with (most) mineral or
vitamin supplements has no clear benefit and might even be harmful.
These vitamins should not be used for chronic disease prevention. Enough
"Hey doc, I saw on an ad on the TV last night about this new asthma inhaler. Shouldn't I give it a try?" This type of question would occur several times a week. When I started practicing medicine it was considered unethical to advertise medical treatments. Now, we're bombarded with enticements for tests and treatments. The inhaler the patient requested cost $264 a month - more than double what he was currently paying for an effective generic inhaler.
Somehow, we have brought into the hype that more is better, and that if you would just get your mammogram or PSA, that early detection would prevent cancer deaths down the line. A recent study in the British Medical Journal found that the death rate comparing mammography with annual breast exams was no different. And a significant number mammography patients went though additional surgery, radiation therapy, or chemotherapy - which was unnecessary. The effectiveness of PSA monitoring remains controversial, and many prostates are being removed where the negative effects far outweigh a theoretical possible benefit.
The evening news ads bombard us with "low T" warnings and erectile dysfunction treatment promotions. Somehow, testosterone experimentation is happening, much like the era of hormonal replacement for all menopausal women. The warnings of these drugs like blindness, rising PSA, or stroke are gently spoken while watching loving couples swimming or smooching.
A friend is now monitoring her glucose daily, even though she is barely pre-diabetic. Somehow, she feels the need to be constantly monitored for the condition she does not (yet) have.
A 90 years old wants his cholesterol checked. He'd like a drug for it that he saw on TV. Really?
Most of now have a medically attended birth and medically attended death. We now have the benefit of effective medications for blood pressure, diabetes, and abnormal lipid panels. But the medical industrial complex wants us to be major consumers - more visits, more tests, more surgeries. There is some evidence that may be making the industry nervous as health cost increases seem to have leveled a bit.
The industry to struggling a bit to bring out new blockbuster billion dollar drugs. The dollars that go into the health care system are coming from our pockets and insurance premiums. Given the waste and inefficiencies in health care delivery, this hurts the entire economy and has allowed the medical-industrial complex to become bloated. Obviously a balance is needed.
There is bloat in duplication and overuse of high tech equipment. The fastest way to pay off a new scanner is to run more tests. The incentives are to do more in the fee for service system. Pharmacy and device sales reps abound in doctors offices and hospitals. Ethical lines are blurred when free meals and paid lectures are offered to MD's by the industry. TV and magazine ads drive up cost and utilization. Administrators want a lucrative bottom line.
My concern is the that medical industrial complex will become even more aggressive. The possibilities will be more ads, direct mailings, "free" screenings, discounted surgeries, false claims of testing and treatments, etc.
My advice: be a careful and cautious consumer. Don't become medicalized. And to the medical profession: be more proactive countering the barrage of biased information we hear and see daily.
Ben's first symptom was coughing up blood. The cancer had been silently growing for months, if not a few years. He had no pain or shortness of breath. The chest X-Ray showed a "5 cm L hilar mass" and the subsequent CT scan showed enlarged lymph nodes and likely spread to the liver.
"So Doc, what is it? A cancer? How much time do you give me?" All these questions on a first visit when I don't really know Ben, his family, or life situation. As a pulmonologist, this scenario happened once or twice a week. The patient was usually a smoker but Ben was not. At age 49, he'd been a basically healthy guy.
I always found it important to say, "I don't know, but let's find out what's going on and here's the plan I'd suggest". This usually included blood tests, the CT scan, and a bronchoscopy to find the diagnosis and make further plans. It was far too soon to jump to Ben's future, but Ben said "Come on Doc, give me your educated guess." I'd usually say, "My crystal ball is cloudy and I can't read your future but I promise I'll tell you all I know as we go along".
Bronchoscopy (from a pulmonologist's point of view) is a pretty simple outpatient procedure. With the use of lidocaine to the vocal cords and airway and with very light use of short acting sedatives or narcotics a thin flexible scope is passed through the nose (usually) into the airways and everything is seen on a video monitor. Ben's tumor was evident in the L mainstem bronchus - red rough angry looking tissue. Biopsies of the tumor were done - and Ben wanted to see the monitor. I showed him the findings and explained that we would know the diagnosis the next day.
It was a non-small cell carcinoma of the lung - the most common type. Again Ben asked, "OK now how long to I have." Small lung cancers that are near the periphery of the lungs have the best outlook and are often curable. However Ben's cancer was subsequently proven to Stage 3B.
Again, Ben's question and how should I answer it. Recently in the New York Times a young Neurosurgical Resident posed the question, "How Long Have I Got Left". Where is any patient on the statistical curve? How can we begin to know what the response to treatment will be? Actually in the last decade there have been some significant improvements in treatments and survival in some patients, but the measured improvements are sometimes in months rather than years.
I would say to Ben, "I don't have the powers of a deity and can't see the future, but these are the broad statistics. I'm hoping you may not only beat the averages but be an outlier. You are younger and healthier than many of the patients studied. You're not a statistic. I'm sending you to the best cancer treatment and research center available so let's see what they have to say. But it's going to be one day at a time. I'd like to see you again once a plan is set in place.
Comment: "Giving a patient time" can be self-fulfilling so doctors must be careful. On the other hand, refusing to lay out the realistic outcome of other patients (statistics), is denying the patient of information they often want to know. Staying connected with the patient provides emotional support as they transition to oncologists or surgeons.It's the human to human connection that makes medicine the most powerful - and humane.It's also important not to dodge the issue of death. When the patient reaches the stage of dying, doctor's often fail to tell the patient that it's time for hospice and comfort care. We need to be comfortable with mortality and frailty - both our own and the patient's. We need the judgment and wisdom to guide the dying patient to palliative and comfort care.
John and Eva had ongoing conversations about their home which was now far too big for their needs and lots of trouble and expense to repair and keep up. John said, "It's the yard, the leaves, the painting, and general repair and replacement problems. What's next to go? The refrigerator or me?" Eva was tired of shopping and cooking. Her arthritis was slowing her down. She told John, "OK, you retired from work, but when do I retire from cooking?" Also, they were beginning to lose contemporaries and their social life was shrinking. There was a growing sense of isolation. Their children and grandchildren had busy lives and couldn't be part of their daily life.
The started looking around at Continuing Care Retirement Communities and found lots of options and a fair amount of confusion about what might be future costs. They were leaning toward a "Type A" CCRC, but each of those had somewhat different costs, though they were much more inclusive than Type B or C, the latter being fee for service.
But the headaches were just starting. They had raised four children who were now on their own, but the remnants of their possessions were still in their house along with "stuff" that they had inherited from prior generations. John read an article about "possession paralysis" in the New York Times and shared it with Eva. "It fits us doesn't it Eva. We're both pack-rats and we have been putting off moving partially due to all the "stuff" we have."
So they began to downsize - trips to the library to donate books, trips to Goodwill to donate, giving things away to family, but this hardly made a dent. "We have all this china, crystal, and silver but there's just no market except for the silver metal. Don't kids entertain any more?" The children began to step in with Craig's List, eBay, and hauling stuff out to their own homes and an estate sale.
They finally found the CCRC they were hoping for and it came time to do a pricey buy-in which was painful even though their estate would get 80% of it back. The housing market was beginning to bounce back and it seemed like a good time to put their home on the market, get a "bridge loan" and plan a move.
Both John and Eva found the whole experience stressful, but couldn't see anyway around it except to continue on in their own home, and hire in help eventually if needed. Eva said she was so emotionally attached to family things that "possession paralysis" felt very real to her. Yet she didn't want to handle all the house issues if something happened to John.
It took about 6 months for the house to sell, the CCRC move to occur, and almost that long to dispossess themselves of all their "stuff". Selections were finally made, charity trucks carted off many boxes, and the "kids" came with U-Haul trucks.
Eva remained in good heath, but within a year of moving into the CCRC, John developed rapid onset Alzheimer's. He was moved to the Memory Care Unit, while Eva could stay in her independent apartment in the same complex. She was able to participate in John's care without being overburdened by worry about safety or costs. His long term care was fully covered and their were no additional expenses.
Comment: We are on the cusp of having the Boomer Generation entering into the final phases of their lives. The problems and expense will be huge. Very few folks have long term care insurance and some still assume that Medicare covers long term care - it doesn't. We aren't well prepared as a society to deal with these problems.
Les called me about his PSA. "Jim, it's rising and now up to eleven and they're recommending treatment. What would you do?" Even as a long retired MD, I still get medical calls from friends and relatives. Actually, I feel honored and try to do my best, researching the latest journal articles and editorial opinions. Of course, the prostate cancer literature is cloudy at best with scant evidence that the huge number of surgeries are actually saving lives. Most of us die with prostate cancer but not of prostate cancer.
Les went ahead with surgery which proved to be both difficult and non-curative. The cancer was found to have spread into the pelvic lymph nodes, plus he went into a very rapid irregular heart rhythm requiring a stay in the ICU for a few days. After that he was given radiation and hormone blocking drugs to try to stop the cancer.
Les seemed to stabilize and did reasonably well over the next four years, but then developed pain and fever in the left flank. The CT scan showed that the kidney was obstructed by a tumor mass. Looking in there with a scope, a small stent was passed up into the kidney to drain the pus, and a new cancer found in the area - most likely secondary to the radiation he received.
As Les become weaker the family rallied around. Jeannie, his wife, and the three adult children and seven grandchildren were supportive. Jeannie went with Les to the Oncologist who prescribed chemotherapy to "buy time", but again there were complications. Les became weaker, lost all sense of taste and smell, and it was found he had a very low serum sodium level. This required hospitalization, water restriction, and very expensive drugs.
About this time, Les said "NO MORE". The treatments had devastating effects that weren't benefiting him. Jeannie was providing all his care at home, a hospital bed and recliner were purchased, and part time help employed. The doctors were "giving" Les about a year to live, but when I stopped by to see him, his skin was pale and clammy, his pulse 120, and he could barely stand up. I asked Jeannie what she would do when the end came. She said, "Well, I'm not going to call 911 because they would come in and do CPR and Les certainly doesn't want that."
As gently as I could, I recommended that Jeannie talk to her doctors about hospice and introduced her to the POLST form. Her first reaction was that Les wasn't sick enough yet for the "6 month prognosis".
I responded, "Jeannie, why not just ask for a hospice evaluation and let them get to know him and evaluate his current status. They are really great at this. I gave her a Hospice brochure and a POLST form and suggested that she and Les discuss this with their doctors."
Fortunately Les was shortly thereafter on hospice with a signed "DNR" on his POLST form which would be honored by Medic I if called. Extra help was provided and Jeannie began to get a little more sleep. Les died a few weeks later with Jeannie and family at the bedside and the hospice nurse present.
Recently at a conference, I invited others to consider posting their stories on this blog about end of life issues. The following story is from a physician who volunteers with Compassion and Choices in Washington State. About 1 in 500 deaths in Washington state (0.2%) occur by utilizing Washington's Death with Dignity law - passed by a 59% margin several years ago. Oregon's similar law was also passed by a voter initiative, and Vermont's legislature recently passed a similar law. Here is this physician's story:
"As a Client Services Volunteer for Compassion and Choices of
WA, (C&C) it is my privilege to help a dying person in choosing his/her way
A few years ago I helped an incredible woman, 64, end her
life.She had gotten the diagnosis of
lung cancer, unrelated to smoking, 4 years earlier.In the midst of an active and successful
career as a consultant for large companies seeking more effective Human
Resources, she was stunned by this news.She had some surgery, which relieved her difficulty with breathlessness,
followed by chemotherapy.The bouts of
chemo were hard to tolerate for her as an always healthy, exercising, normal
weight person.But she got through them
and enjoyed a remission of 2 years.
A year later, recurrence was found in her lung, brain and
liver.Radiation and more chemo seemed
to shrink these lesions, but her mental acuity was slowly decreasing.She and her husband decided to pursue, via
the Death with Dignity Law, an option to end life if she needed to do that.
Because she had obtained a prognosis or 6 months or less
from her physician, she was eligible for that choice in WA. I was called when
they contacted C&C, so I met with them in their condo.We began the process specified by the Law.
After another physician confirmed her diagnosis and prognosis, she also was
found to be non-depressed and mentally competent to decide.She completed the Written Request form and
the waiting period.Finally, she
obtained the prescription from her personal physician.
She continued to work past her initial 6-month prognosis.Then her strength forbid the traveling and
exertion required.They took the trip to
Antarctica she had always wanted.However, she again used her strength of
character to get there. Predicted bad weather
caused the captain of their small ship to turn back toward the Cape of Good Hope, but she rallied the other passengers
to demand that the captain check and recheck the weather.A better forecast allowed them to proceed to Antarctica.
She decided to set a time for death when she was unable to
go outside for walks with her husband and she was getting more short-term
memory loss, to the extent that she could not read books.They got a rental hospital bed for the living
room.They invited close family and
arranged a time with me.On a weekend
morning, after a light snowfall near Christmas the family spent time sharing memories
and she took anti-nausea medications.I
arrived and mixed the powder with warm water.
She expressed her love for each person and her gratitude to
me.Holding her husband closely, she
drank the small amount of liquid.She
chased the bitter taste with a favorite juice.Her family gathered near her and held each other.She quickly slept and died." Posted by an MD.
Comment: Years ago I had a similar case where I was pretty sure that a patient with end stage mesothelioma was squirreling away sedatives and contemplating ending his life of suffering with an overdose. He was suffocating as his lungs were being progressively compressed by tumor masses. I presented his case to our Ethics Committee and was surprised that the Ethics Committee supported his autonomy even though it appeared to violate the "Do No Harm" ethical principle (and was against the law at that time). In reality I think it could be argued than harm was being forced on this man by not giving him the help he wished. At any rate I think he may have ended his own life with medications. How often is this quietly done? Probably much less often now that Hospice is widely available and a Medicare benefit. JdeM
In the interview I note two patients. Both begged to be taken off
the ventilator and die. In one we followed his wishes, in the other we
didn't. In another patient, the family begged to stop; yet in another a
family begged to continue. Death thus becomes a negotiated event in
the modern ICU - a real tour de force in applying the ethical principles
of autonomy, do-no-harm, and beneficence.
In the back of my mind during the interview was a recent lecture from Coursera (free on line) where they were tying to define death. It used to be pretty simple - when the heart stops you die. Well, with new interventions such as hypothermia, a higher percentage of patients are surviving than the current rather dismal 15%. So they simply stated, that death really is defined by when we stop resuscitation! I can see from an EMT or ER physician's training that this would be their focus, but the vast majority of us simply have the dwindles from old age sometimes complicated by cancer or heart disease or dementia. For the frail elderly, CPR rarely works and many patients have standing orders to prevent the terminal assault of chest compressions and electric shocks.
But it's not always straightforward in the ICU in terms of the ventilator. It's the system support of last resort, bringing oxygen into the lungs and getting rid of CO2. When everything else is failing we need to talk about the ventilator. Is it really helping or just prolonging dying? About 70% of all deaths in the ICU are from withdrawing the ventilator. Everything else has been tried. It can be a bumpy road in shared decision making for families and physicians. Letting go is often the right thing to do, but it's never easy
Elton John had it right, "It's sad, so sad. Why can't we talk it over. Oh, it seems to me that sorry seems to be the hardest word."
Mistakes are all to common in medicine, but can we say the "hardest word" when we're involved?
Example 1: There's a diagnosis of recurrent lymphoma in the ICU. The oncologist gives a phone order for cytoxan, prednisone, and vincristine. The recorder, working a double shift, mistakenly writes the vincristine daily for 5 days similar to the prednisone order. The fatal dosage is given to the patient over the ensuing days. He dies in bone marrow failure. The oncologist met with the family and apologized. A review was carried out. Systems were improved. There was no lawsuit.
Example 2:In a radiology department, a cleaning solution rather than a dye is accidentally injected into a patient's femoral artery leading to a painful death. The hospital representatives and physicians promptly met with the family, admitted a mistake, apologized, and a financial settlement was offered and eventually accepted.
Example 3: A pharmacist fills a prescription for a patient with asthma. Instead of prednisone, the pharmacist mistakenly counts out digoxin, a pill given for heart disease. Digoxin can have severe side effects even at a dosage of one a day. The prescription is followed by the patient: take 8 a day for 3 days, 6 a day for 3 days, etc. The patient calls the MD about the symptoms of severe nausea and notes the pills look different than usual. The medication is stopped and with treatment the patient luckily survives digoxin poisoning. No apology was forthcoming and the patient lost confidence in the integrity of his providers.
Medicine is a proud profession, with medical ethics at its core. But it's complex and fragmented. Atul Gawande promotes improvements in standards of practice but implementation is difficult. Medicine is highly regulated in attempts to control quality. Currently doctors, nurses, pharmacists and others can face hospital sanctions, medical disciplinary boards, media scorn, and malpractice threats when they make mistakes. In most situations, a number of things have to go wrong at the same time in order for the mistake to occur. None of the above are my personal mistakes, but "I've been there, done that!"
On a personal level it's humiliating and devastating to be involved in a serious mistake. I sat down with a psychiatrist friend after a significant mistake and it helped to talk it out, but the hospital's legal department had to be notified, affected family members met with, and eventual reports to the state dealt with (and this is in the middle of a 60+ hour week). Fortunately I was not sued, but the worry was palpable.
There's pretty good data now, that fessing up is the best thing to do from a legal standpoint and certainly from the moral view. But believe me, it's not easy when you'd rather hide. When one patient died after a procedure that I probably shouldn't have attempted because he was so sick, I sat down with the family and explained the whole sequence. The son had lots of questions, but then looked reflective and said "It must be hard to be a doctor sometimes. Look it's OK. Dad was going nowhere and he's in a better place now." Basically, he had let me off the hook.
On the prevention side, there's good data from systems engineers (like Toyota and Boeing) that critical mistakes can often be prevented with good quality management and systems surveillance. All hospitals and major clinics have extensive quality control and review. The answers can be simple or complex. For example, for some recent eye surgery I had, I was asked my name and birth date three times by three separate people (even though they all knew me) - along with what operation I was having and on which side. These quality/safety techniques require constant review, updating, and reporting.
There are quality ratings of hospitals by procedures that can be reviewed. The hospital that does large numbers of, for example, carotid surgeries will almost always have better outcomes and fewer mistakes than the hospital that only does a few. It brings into question the future role of the smaller hospitals. The issue is not so much mistakes as the inability to match the experience and quality of an institution that does large number of a complex procedure.
How do we deal with all the parties involved in a mistake (the patient, family, providers, institution, legal, insurer, etc.)? The answer is both simple and difficult - apologize! Mistakes can be honestly dealt with. A good example of this are the tort reforms successfully instituted in the state of Michigan. In many states, a doctor's initial discussion with the patient and family about a mistake is not discoverable in a lawsuit.
It is best for all involved to personally make a face to face apology! Sometimes one is forgiven, then sometimes not. But if animosity can be decreased, often a settlement can be reached after an honest admission of a mistake.. Involving the patient and/or loved ones in a case review with all present can be very powerful. It's very hard to stay angry or want to punish someone who can look you in the eye and sincerely apologize, plus actively listening to all your concerns. There comes a point that we all recognize that we're "only human."