What Happens When You Opt Out of Dialysis?

If quality of life is the most important objective for a terminal patient -- and for doctors, caregivers, and family members -- during the end stages of the dying process, how are the pros and cons of dialysis weighed? Will the patient be burdened by dialysis or experience greater discomfort without it?

GeriPal does a good job of examining a new study in the Journal of Pain and Symptom Management that looks at quality of life for those who deny dialysis. It's an intriguing and fairly thorough study that compares renal disease suffers with cancer suffers -- but nonetheless, doesn't give us a clear answer. And such studies may never conclusively do so. The more time I spend watching how we manage emotional and physical pain, the more I better understand how relative pain is. As individual as we are in life and taste, so too are we individual in our definitions of pain. But a study of this sort does go a long way to take dialysis off the path of immediate response for terminal patients and to help us think about what matters: the patient's comfort.

Writes Alex Smith:

What are the clinical implications and remaining questions?

• I usually tell patients and family members that dying of renal failure is "peaceful." I say, "you generally become more and more drowsy, and drift off into a sleep from which you don't wake." This article challenges those words. While I think the final hours and days may resemble that trajectory, the last month as a whole is actually a time of relatively high symptom burden. Clinicians should attend to these symptoms as aggressively as they do for patients with advanced cancer.
• The degree to which these symptoms were due to renal failure or co-morbid conditions is not clear. These patients were not young healthy folks who refused hemodialysis, they refused because they were elderly (mean age at death 81) and had a high burden of chronic conditions like heart failure. Comorbid conditions may be as great a source of suffering in the elderly as the terminal condition (a very Geriatric perspective).
• We still have no randomized controlled trial of hemodialysis vs. no hemodialysis for elderly patients with multiple chronic conditions. We don't know if "conservative management" (no dialysis) is actually associated with a shorter time to death as is widely assumed. We don't know if hemodialysis is associated with a greater burden of suffering, or if (maybe) the trade-offs in terms of reduction in swelling and shortness of breath by using dialysis are worth the hassle, risks, and time spent hooked up to the machine.

Read the whole post at GeriPal.

Provider Refusal of Futile Care.

Thaddeus Pope has an intriguing post at his blog today about what can be termed the undermining of doctors' refusal of care. He cites a recent article by Christopher M. O'Connor, associate legal council for Lancaster General Hospital (where I was born), in the recent Journal of Lancaster General Hospital. The article is titled, "Can the Health Care System Ever Say No?" and addresses the lack of clear guidelines and protections for physicians who wish to end care that is not beneficial.

I have written passionately about the problems of provider refusals (so called conscience clauses) that often allow a provider -- a doctor, a denominational institution, pharmacists, etc. -- to deny services that they are morally, ethically, and most often religiously, opposed to. Twenty percent of Americans are treated in Catholic hospitals, for instance, where they are denied medical services that the Catholic Church opposes. These guidelines discriminate against women predominantly regarding reproductive services, but also against gays and the elderly. I strongly oppose this type of discrimination and see it as a violation of patients' rights.

But Connor comes at it from another angle. What about doctors who are, by emotional family members or fearful terminal patients, asked to provide care that will not prolong life? Doesn't the provider refusal law protect them from perpetuating the suffering of patients?

Jessica Mitford wrote in her 1963 bestselling expose of the funeral industry, "The American Way of Dying," that most of us are coerced into buying services and products for our deceased loved ones because we are uneducated consumers, distraught with the emotions that surround death, pressured by cultural forces that dictate a contrived form of propriety, and forced to be consumers of an industry that we know very little about.

The health care industry is not unlike the funeral industry in that we know little about it as consumers until we are forced to make use of it, often under great distress. As death and illness have become more and more institutionalized, taking place primarily outside the home, our culture has become less and less versed in how death occurs, how the medical industry operates, what choices we have in cases of terminal illness. And too, medical technology has created more choices and options, making that removed industry even harder to understand easily. We are uninformed consumers, in other words, lost, when forced to enter into the health care system, in the complications of it all. And the emotion of it all. The responsibility of making decisions is a terrible weight for the ill and their family members. Doctors are looked to as paternal, autoritarian advisors, the ones who know everything and can make the best decisions for us.

This can be detrimental in the case of a young woman who has been raped and happens to enter a Catholic hospital where state laws don't require that the emergency room workers where she is treated inform her of the existence of emergency contraception. Lives are ruined in these instances. But the other side that Connor reminds me of this morning, is when a doctor has to say to an unknowing and distraught loved one that a Do Not Resuscitate order is the very best for their loved one, a path that will cause the least amount of suffering.

In a culture where denial of death is championed, where suffering is glorified, where patients are faulted for "giving up" if they go into hospice, where fighting against death and illness is termed as a battle that requires great strength against all odds, how can we educate emotional family members and patients about how to die? And how do we equip well-intentioned doctors to not only communicate impending death but to make legal decisions about ending futile care? I don't have concrete answers. And obviously neither does the medical industry. Certainly the answers aren't to be found in the cultural stories that we are bombarded with daily by all sorts of media.

I have a hospice patient right now who is having a difficult time understanding that he is terminal. His family members and friends keep sending him cards that say "get well soon." The facility's church group come to pray for a cure for him and tell him that no miracle is too impossible for God. We had a very difficult time finding an effective pain management regiment because he was ashamed to tell the nurses when he was in pain, intimidated by their authority, and unsure of what was happening to him. He failed to understand that there is life between full function and death and that the period of disability he is entering has value -- because like the rest of us he just didn't know. He doesn't know what's coming and he has no reference to the experience in his prior 65 years. He looks to the nurses and doctors for direction; they look to him for decisions -- neither fully able to discuss the matter frankly.

Patients will only be able to make informed medical decisions when they are informed consumers. Unfortunately, so many factors impede proper informed consent. Yet I fear that strengthening provider refusals improperly limits patients' rights, taking the most important decisions out of the hands of those lives directly affected. There's nothing like informed, patient, incremental conversation to prepare a patient for what is ahead. Until doctors and society are willing and able to have those conversations, we will struggle to keep decision-making in the right hands: the patient's.

The post:

His conclusion: "Recent legal decisions have not necessarily prohibited the health care system from refusing to provide care, but they have questioned, and perhaps narrowed, the circumstances in which the medical community can refuse to provide care it believes is both ethically and medically inappropriate."

In a section titled "unsettled legal foundation," O'Connor writes: "Courts have recognized that physicians cannot be forced to provide care that is not beneficial. However, they have failed to announce concrete standards or consistent principles to guide the medical community to resolve disputes between it and patients (and their families)."

O'Connor, actually goes beyond making the point that the law is unsettled ans suggests that it is getting even less provider friendly. Citing the March 2009 Betancourt opinion, he writes that "Although courts, and in some cases, state legislatures, have shown a willingness to recognize circumstances in which the health care system can refuse to continue care that is not beneficial, recent events indicate that the tide may be turning."

What Is A Patients' Right?

At the end of life, sedating a patient properly to make certain they are without pain is difficult. Drugs can be disorienting, often the patient is not fully conscious, communication can be muddled and difficult to understand. The influence of concerned family members and attending staff can all filter into an untranslatable request or denial of services. Patient requests are easy to ignore.

So too, it seems, that patients during routine procedures are often difficult to understand, according to the doctor in a case in Florida who followed through on a colonoscopy even after the patient's sedation wore off. She has charged that she was under intense pain and wanted the doctor to stop the procedure. He has testified that he thought completing the procedure was in the patient's best interest.

If a doctor's already started a procedure, then the patient begs him to stop, does he have to?

Apparently not, attorneys for the Florida Department of Health say, if the patient signed a consent form giving permission for the procedure.

Health News Florida reports that after a Pasco County patient complained that happened to her during a colonoscopy performed by gastroenterologist Kozhimala John last year, DOH lawyers looked for some clause in the Medical Practice Act that would apply.

They initially filed a complaint under the wrong-side or wrong-procedure statute, reasoning that the patient consented to a colonoscopy with anesthesia, not one without it. But the doctor's attorney said that wouldn't fly, and they decided he was right.

"There was unnecessary suffering inflicted," DOH prosecutor Robert A. Milne told the Florida Board of Medicine "but we had to (drop the charges) for legal reasons."

In the end the Zephyrhills doctor, who is board-certified in internal medicine and gastroenterology, was charged only with inadequate record-keeping for failing to document the many ways the colonoscopy went awry.

When the Board of Medicine heard his case in Orlando earlier this month, some members fumed about the state dropping the more serious accusation.

Donald Mullins, one of three non-physicians on the 15-member board, spoke sharply to John.

"It's her body. She needed to make the decision. These were not your decisions to make I'm disgusted that we're going to (accept the settlement). I just can't believe it!"

Miami pediatrician Onelia Lage also said John displayed too little regard for the wishes of his patient. "Regardless of the legalities, when the patient screamed and said, 'No!,"You needed to listen."

But John's attorney, Bruce Lamb of Tampa, pointed out that the state could not prevail if it took the case to a formal hearing. Lamb, a former DOH prosecutor turned defense counsel, noted that the settlement agreement on the record-keeping charge was unusually strict.

In it, John neither admitted nor denied violation of the law but accepted a reprimand and $15,000 fine. He agreed to perform 100 hours of community service and take a course on "risk management."

A description of the May 2008 day of the colonoscopy is contained in DOH's investigative records. They show the colonoscopy was under way when the sedation, a common mix of Versed and Fentanyl, wore off. The patient told John he was hurting her and pleaded for him to stop, the records show.

He tried to increase the sedation, but there were problems with the IV. "Please stop!" the patient kept insisting, while the nurse tried to shush her, the file shows.

The doctor didn't stop until he was done, he told the investigator, because he thought he was acting in the patient's best interests. He was almost done, he said, and he wasn't sure whether she was thinking clearly because of the drugs. He said he didn't want to put her through it again, since patients say the worst part of a colonoscopy is the preparation for it — drinking large amounts of chalky liquid and many hours in the bathroom to clean the colon for a sharp image.

But the patient was unhappy that her protest went unheeded. She filed a complaint with DOH.

John said the reason the scope was difficult to push through was the scar tissue in the patient's abdomen left after several surgeries. He said that the patient's perception that the nurse was holding her down may have been a misunderstanding, since he asked the nurse to apply pressure to the abdomen.

He had trouble administering more sedation because the intravenous line kept infiltrating the vein and he couldn't find other usable veins, John said.

He concluded: "Most people would say: 'I didn't really mean for you to stop the procedure even though I told you to...' She was under sedation. I couldn't take her words for sure."

The Death of Ivan Ilyich and Redemptive Suffering.

I missed this fantastic post at GeriPal when it first went up in September. Thankfully, it's a timeless post that asks readers to consider the kinds of suffering experienced at the end of life, how the medical profession currently treats them and how it should treat them.

Please head over to the site and read the comments. As I struggle away on writing about end of life issues, I find the discourse on suffering to be the most contested. No one wants to talk or think (or invest in the study of) pain and suffering. Blame taboo, blame the tussle over faith and the meaning of life, blame fear; whatever our reticence as a society to examine end of life care, death always comes. Facing it is no real bravery; it is a fact of life. Ensuring patients' choice at the end of life is not a gratuitous act; it is a matter of human rights. I am always concerned when voices within the medical profession rise up in defense of pain and suffering.

This week’s Lancet includes an article titled “The Death of Ivan Ilyich and pain relief at the end of life” authored by Guy Micco and GeriPal’s very own Alex Smith and Patrice Villars (it can be viewed for free if you register). This is a thought provoking article focused on the question of whether there is overuse of pharmaceuticals to treat various forms of suffering in hospice and palliative medicine. It also serves as a nice follow-up to Patrice’s post on the geriatric care of the hospice patient.

The authors argue that a good death, as seen through their interpretation ofThe Death of Ivan Ilyich, may include physical and existential suffering. Tolstoy’s character finds redemption in his suffering; he remains conscious through the agony of a prolonged and painful death and ends up with a greater understanding of life. The authors further argue that such a moment of clarity may no longer occur if we rely on practices that promote complete freedom from suffering through the over use of pharmaceuticals:

“What would happen if Ivan Ilyich—a modern day “John Doe” or “Everyman”—were dying in the USA now? At home or in the hospital, it could be the same story: when he became unable to speak coherently for himself, his wife or perhaps the ward or hospice nurse, seeing him flail and hearing him scream, would request morphine and ever-more morphine. And, if that did not work, something would be found that would work to extinguish the visible signs of discomfort: lorazepam, haloperidol, phenobarbital. Drugged, but without “pain”, what would become of Ivan Ilyich's inner experience? Would it be transformed? Would it go away?”

My immediate thoughts after reading this paragraph turned to the increasing use of symptom scores to assess quality in hospice and palliative medicine (just this week I finished reading one bereavement survey where the benchmark was NEVER having pain). By setting a one-size-fits-all benchmark of quality on complete pain relief we may be going against the very foundation of palliative care – respecting patients' and families' values and preferences regarding end-of-life care. Some patients may value lucidity over freedom from physical discomfort; recognizing this would be a true measure of quality in hospice and palliative care.

What do you think? Do we, as a hospice and palliative care community, have an over reliance on the pharmaceutical relief of suffering, whether it be from pain, anxiety, or “agitation”? Is Tolstoy’s idea of a good death “redemptive” for some leading to “self-understanding or spiritual awakening”? Did the authors misread Tolstoy (was his death even redemptive?)

More Training in Pain Relief As A Vet Than A Doctor.

The British TimesOnline reports a recent study, funded by The National Council for Palliative Care and printed in the Journal of Pain and Symptom Management that looks at continuous deep sedation (CDS) and how it is used by doctors to manage pain and suffering during the last days of a patient's life.

As I've written, CDS is legal because relief of pain is the objective and death is only a secondary outcome. In the US, what is called the "double effect" prevents doctors from being prosecuted for CDS.

The study polled 3,000 doctors and found that about 1 in five administered "infusions of drugs to keep patients unconscious for hours or days at a time."

In appropriate doses, sedatives and strong painkillers are considered a valuable way of easing the pain and anxiety of patients who are dying with conditions such as cancer.

But 18.7 per cent of British doctors polled said they used drugs to invoke “continuous deep sedation” in a dying patient, a practice which in other countries is seen as an alternative to legalised euthanasia

.

The study also found that of those surveyed, those who supported legalization of assisted suicide were 40% more likely to use CDS. Those doctors with strong religious beliefs or who were opposed to legalizing AS were less likely to use CDS.

Yet, the report's findings may be skewed by what experts consider a lack of understanding among general practitioners of how various drugs work. In other words, some may think they are using CDS when they are not or vice versa.

“Some doctors who are not specialists may be confused and incompetent in using these drugs but the study suggests they are misunderstanding what they are doing as well.

"Dying patients are more likely to be drowsy or asleep in their final days and doctors might assume wrongly that this is a result of medication.

“It does not mean that they are hastening a patient’s death. But we do have ample evidence that many doctors do not know what they are doing when it comes to palliative care, and whether or not [dying patients] get good control of their pain and symptoms is a lottery.”

The article concludes with this haunting quote:

Simon Chapman, director of policy at the council, said that sedation was recognised as an appropriate part of end of life care for some patients.

An official for the Patients Association said: “There is no doubt that the vast majority of patients’ families who contact us after a death do so because they are haunted forever by watching their loved one not have the necessary care, including sedation.

“It is imperative that everyone considers making a living will to make your views about end of life care clear and understood.

“At the moment you have more training in pain relief as a vet than a doctor.”