Continuous Deep Sedation and Patient’s Rights

  1. Introduction:

The purpose of this paper is to argue that the practice of CSD needs to be altered so that it is more patient driven. As it stands, CSD occurs with virtually no input from patients or family members. The healthcare team primarily determines when CSD should be used. (site AMA and other protocols-We can use the CEJA article Dr. Wellman sent.) One unfortunate side effect of this approachis that a patient must progress through several stages of a terminal illness that may be accompanied by extreme symptom discomfort including (I’ll site some nasty things here-CEJA has a good list) many of which the patient may have wanted to avoid by CSD. Protocols for CSD are sometimes referred to as a “last resort” (Site-“we turn to it when everything else fails” among other papers.) The official AMA protocol is consistent with this “last resort” mentality. (I’ll verify that) This whole practice is inconsistent with the current model of delivering healthcare which emphasizes respect for patient autonomy and choice. We argue here that instead of having a healthcare team dictate the use and practice of CSD, it should be offered on demand as determined primarily by an informedpatient.

  1. What is Continuous Deep Sedation (CSD):

CSD is a specific type of palliative care which falls under the more general category of palliative sedation therapy (site some sources here which use this terminology-CEJA-Morita-Lo, etc.). What distinguishes CSD from other types of palliative sedation therapies is the intent to keep a patient permanently void of all mental states through to the patient’s death. In other words, patients are rendered permanently unconscious through the continuous administration of barbiturates. (Note here distinguishing analgesics and barbiturates.) Patients retain physiological signs of life such as respiration and circulation, which can be measured, monitored and adjusted to maintain balance. Unfortunately patients will be unable to interact with family members, or even themselves, since they have absolutely no conscious life or mental experiences while under sedation. (site) They cannot self-reflect or respond to the communications of others, whether from loved ones or healthcare providers.

CSDseems drastic, and it is, but it is in response to equally drastic and compelling circumstances. Symptoms leading to CSD include “…delirium, dyspnea, pain, nausea, vomiting, myoclonus, anxiety, and depression.” (Ghafoor and Silus-p. 532-CEJA has some good ones here as well). It is also stressful for healthcare providers to care for a patient that is in a state of chronic and refractory suffering. (Brajtman 176) Use of nutrition and hydration are typically halted. (site) Thus, the practice may seem similar to euthanasia or hastening death. However, studies conducted on terminally ill patients undergoing CSD show that their deaths were not hastened when compared to other terminally ill patients at similar stages in their diseases that were not provided CSD (see end notes 13 and 14 in CEJA site). In fact, a general consensus has been reached among healthcare providers that CSD can be clearly distinguished from practices that involve the intentional hastening of death such as occurs in physician assisted suicide and euthanasia. (site-perhaps site CEJA here)

CSD can be distinguished from other types of palliative sedation therapies, such as mild and intermittent, (site T Morita here and CEJA if desired)which include the intent to return patients to a conscious state. For instance, a patient may be sedated for a specific amount of time at the onset of severe symptoms. The patient is then returned to a conscious state in hopes that the symptoms have subsided. This allows family members and healthcare providers to maintain communication with patients. “Medications could be started, stopped, ore restarted, allowing the team to respond to a family’s request to discontinue or reduce the sedation once the patient was calm so that communication could resume.” (Brajtman 173) (I can also pull out a good citation from CEJA here if it matters) This is a preferred form of sedation therapy since it does not entail the intention of loss of consciousness until death. Unfortunately, it cannot always be successfully administered. Patients may never be able to return to a conscious state that does not involve refractory symptoms. Thus continually returning a patient to such a state would amount to a kind of torture.

Language involving sedation therapy has been vague and imprecise. References to sedation therapy intended to be permanent often distanced itself from this permanence with expressions like ‘sedation for intractable distress in the imminently dying,’ ‘end of life sedation,’… ‘palliative sedation,’ ‘sedation in the final phase,’ and ‘palliative sedation therapy’” (Muller-Busch, 2003, 2-citation from my paper and CEJA). Use of the term “terminal sedation” (site) which most accurately characterizes the permanent loss of consciousness through to complete biological death, gave way to the euphemistic expression “continuous deep sedation.” (site) A return to a more accurate but less harsh characterization resulted in the expression “continuous sedation to death.” Euphemistic expressions cause problems of clarity. They hide from us the full implications implied in the meaning of terms and as such make informed decision making regarding their use more difficult. The terms we end up using to distinguish sedation therapies that are temporary from those that are permanent should do just that. For the purposes of this paper we will continue to use “continuous sedation to death” (site) since it accurately entails the intent of the therapy without having to use the word “terminal” which seems for many to be too harsh. Sedation therapies that are conducted with the intent to return patients to conscious states will be referred to as mild or intermittent.

  1. Patients’ Rights, Use, and Protocols

Clearly, it is the permanent loss of all mental life for the patient in CSD that raises a number of ethical considerations unique to that practice. This permanence has led some scholars in the healthcare field to consider CSD a type of euthanasia (site such as “slow euthanasia”). Others consider it distinctly different from killing or hastening death (site). There is clearly a need for CSD, which will be documented shortly, but protocols for its use have been vague and inconsistently utilized (verify this CEJA has the most specific protocol). As it stands now, the practice is considered distinct from euthanasia and is an accepted part of palliative sedation therapies. (Site the AJOB paper I reviewed and CEJA) Given that current consensus, it is puzzling that protocols for CSD leave the patient out of much, if not all, of the decision making.

There is clearly a need for CSD. According to CEJA, “…it is estimated that between 5% and 35% of patients receiving palliative care in hospice programs experience sever pain and other intractable symptoms in the last week of life.” (CEJA-I’ll see if I can corroborate that with another source.) This is an incredible statistic. There are two striking components. The first is the range itself, which is too large. There is quite a difference between claiming one in twenty would experience severe pain and intractable symptoms and quite another to say that more than one in three would have the same negative experience. If we accept the larger number it would be nothing short of endemic and would have to be considered a normal, albeit quite unfortunate, part of the dying process. This is hardly how dying is advertised. Even if we accept the lower number, 5% is still significant. This is inconsistent with the language associated with palliative sedation therapy which often refers to the use of CSD as “rare.” For instance, “[CSD] is an accepted and appropriate component of end-of-life care under specific, relatively rare circumstances.” (CEJA, p. 5) CSD cannot occur in at least 5% of cases and also be a “relatively rare circumstance.”

The language in this area is also troubling. CSD is often referred to as a last resort (cite Lo, CEJA, perhaps others). CSD is to be restricted to only the most extreme cases (which seem to occur in at least 5% of dying patients), and is to be in response to “…severe, refractory pain or other distressingclinical symptoms.” (CEJA p.1) The problem with all of this terminology is that it leaves the patient out of the equation when, ironically, it is only the patient that can ultimately decide such subjective measures. What exactly can constitute “severe” and “refractory” symptoms other than the patient reporting that they are as such? To further exacerbate this problem, by the time the patient has reached this stage they are often unable to communicate. Furthermore, they may have to endure much that they would rather have never had to endure in the first place. (I’ll see if I can produce citations for both sentences)
What we propose as the proper protocol is that terminally ill patients (and probably close family members) be counseled and educated in all palliative measures that can be taken to assure patient comfort through to death up to and including CSD. Full benefits (elimination of all pain and discomfort) and ramifications (permanent loss of all mental life) of opting for CSD should be disclosed. It should also be made clear to dying patients that opting for CSD is well within their rights without giving the patients the idea that they are being abandoned. Current practice does not include such disclosure (site). Palliative care doctors and hospice workers tell patients they will do everything within their power to keep patients pain and symptom free, (site) but this is a vague and imprecise expression. It does not educate patients regarding exactly how their pain and symptoms will be managed, nor does it address the reality that patients may face refractory symptoms.

To improve the situation for dying patients we suggest changes in the protocol for the use of CSD that it is more patient centered. Patients should be allowed to request CSD at any point within the last six months of their terminal illness. They should not have to wait until such time as their symptoms become “severe” and “refractory.” That their life expectancy is less than six months is reason enough. We will refer to this as CSD on demand.

To more clearly articulate these changes we cite a current protocol for the use of CDS followed by our newly proposed patient driven protocol

According to CEJA the current protocol includes eight specific guidelines:

(1)Patients may be offered palliative sedation to unconsciousness when they are in the final stages of terminal illness. The rationale for all palliative care measures should be documented in the medical record.

(2)Palliative sedation to unconsciousness may be considered for those terminally ill patients whose clinical symptoms have been unresponsive to aggressive, symptom-specific treatments.

(3)Physicians should ensure that the patient and/or the patient’s surrogate have given informed consent for palliative sedation to unconsciousness.

(4)Physicians should consult with a multidisciplinary team, if available, including an expert in the field of palliative care, to ensure that symptom-specific treatments have been sufficiently employed and that palliative sedation to unconsciousness is now the most appropriate course of treatment.

(5)Physicians should discuss with their patients considering palliative sedation the care plan relative to degree and length (intermittent or constant) of sedation, and the specific expectations for continuing, withdrawing or withholding future life-sustaining treatments.

(6)Once palliative sedation is begun, a process must be implemented to monitor for appropriate care.

(7)Palliative sedation is not an appropriate response to suffering that is primarily existential, defined as the experience of agony and distress that may arise from such issues as death anxiety, isolation and loss of control. Existential suffering is better addressed by other interventions. For example, palliative sedation is not the way to address suffering created by social isolation and loneliness; such suffering should be addressed by providing the patient with needed social support.

(8)Palliative sedation must never be used to intentionally cause a patient’s death.

What we propose instead is the following:

(1)Patients may be offered palliative sedation to unconsciousness (CSD) when they have been diagnosed with a terminal illness and their life expectancy is less than six months. No further rationale is needed due to the immanence of the patient’s death.

(2)Measures should be taken to educate qualifying patients of all the options available to them, reassuring them that offering unconditional CSD is not an abandonment of patient care. On the contrary. It is a sign that patients can properly control the path to their death without fear of suffering from refractory symptoms.

(3)Physicians should ensure that the patient and/or the patient’s surrogate have given informed consent for CSD.

(4)Patients should also be educated on all available symptom-specific treatments that can be tried before resorting to CSD.

(5)Physicians should discuss with their patients the distinction between intermittent sedation and CSD. Patients should be informed that either option is always fully available. The care plan should also document patients’ expectations for continuing, withdrawing or withholding future life-sustaining treatments.

(6)Once CSD has begun, a process must be implemented to monitor for appropriate care.

(7)CDS is not an appropriate response to suffering that is primarily existential, defined as the experience of agony and distress that may arise from such issues as death anxiety, isolation and loss of control. Existential suffering is better addressed by other interventions. For example, palliative sedation is not the way to address suffering created by social isolation and loneliness; such suffering should be addressed by providing the patient with needed social support.

(8)To reiterate, CSD should be offered on demand to all patients whose life expectancy is less than six months.

  1. Case Studies

In this section we explore an actual case study involving the use of CSD and juxtapose it with how we propose the case could have evolved had our protocols been put in place.

The case of Mr. Tolland:

Fifty-five year old James Tolland, who lived all of his life in a large city in Maryland, led a healthy life-style, eating sensibly and exercising regularly. He had a stressful job in financial management but had a supportive and loving family with three teenage children. After exercising, Mr. Tolland felt an intense pain in his back. He was soon diagnosed with advanced lung cancer leading to spinal metastases, causing his pain. Radiation to alleviate his intense pain was unsuccessful. In fact, he described the movement needed to do the radiation treatments as “excruciating.” Surgery also failed to control his pain. He described the pain as “past 10” on a 1 to 10 scale. With aggressive chemotherapy, it was expected that he could live as long as a year, but the chemo would be harsh and his quality of life would probably be low. In all likelihood, he would be confined to bed. Due to the uncontrolled pain, Mr. Tolland rejected chemotherapy and opted for in-patient hospice care. It was expected that without chemotherapy he would live two to four months. He frequently talked with his wife about his overall situation, indicating that he wished he could be given something to end his misery quickly. He asked his physician in the hospice unit whether that was possible, and was told that it was illegal but that they have effective palliative treatment. Although disappointed, he looked forward to being pain free. The hospice team assured Mr. and Mrs. Tolland that they could control his pain within a few weeks. They described the process they would use and soon started a daily routine of increasing pain medications. For about a month, his pain remained excessive. Even a slight movement of his head sent a knife-like stab of pain through his body. After that month, he described his pain as “almost tolerable.” At about seven weeks the pain was controlled, with a reported pain level of 3 on a 1 to 10 scale. Nevertheless, Mr. Tolland’s general physical condition rapidly declined. Near death, he remarked that he would rather have died than to endure the pain and humiliation he experienced. He died nine weeks after admission into hospice.

If we look at Mr. Tolland’s case in light of our protocol some important differences would emerge. The first is that information and education on all palliative measures up to and including CSD would be provided at a time when Mr. Tolland and his wife would be properly prepared to receive such information. This should be attempted soon after Mr. Tolland has adjusted to his transfer into hospice care, perhaps within one week, and after all of his symptoms have been properly managed. Our protocol offered at this time would entail a more accurate and appropriate response for Mr. Tolland’s question that the most direct way to “…end his misery quickly” would be CSD. Besides offering information on the protocol for CSD, we would be sure include his family members in these discussions and welcome their input. We would put as much power and control in Mr. Tolland’s hands as possible, maximizing his options, which would be both legal and ethical, for realizing what he considers to be a good death given his unfortunate circumstances. We would, in short, empower Mr. Tolland as much as possible within proper legal and ethical limits to control the end of his life so that he has the best chance at avoiding experiences he would deem intolerable and unacceptable.