The Hard Facts about Survival Rates
Max Diamond, M.D., Mary-Kate Kelledy, J.D., Kendra Oliver, MBA
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Situation
- California launched the Physician Order for Life Saving Treatment (POLST) Form on January 1, 2009. Today, the POLST Form remains established as the standard method of advanced medical care planning for persons with advanced illness or frailty near the end of life.
- The POLST Form has facilitated conversations about patients’ end-of-life wishes and allowed health care providers to document those wishes more clearly in advance.
- The questions on the POLST form empower patients with the ability to declare the scope of treatment they wish to receive during end-of-life care. Given the value of the aftereffect of these questions, they must be asked in a manner which is not only clear and empathetic, but also one that ultimately reminds the patients 1) that they are encouraged to discuss their concerns, and 2) that their wishes will ultimately be met.
The POLST form is not just a form; it is a tool for medical providers to administer individualized, compassionate care. At a time when patients likely feel helpless in many respects, the POLST form entrusts them with the freedom to discuss and define their own quality of life, individually. The significance behind this decision-making process gives reason to elaborate this topic. This article is part of a series on the use of the POLS T Form with patients.
Background
The Physician Order for Life Saving Treatment (POLST) Form documents patients’ decisions regarding the following areas: attempted cardiopulmonary resuscitation, administration of antibiotics and IV fluids, the use of intubation and mechanical ventilation, and the use of artificial nutrition. Each of these categories consists of relatively short prompts which, then, lay a foundation for medical professionals 1) to provide the care patients actually want, and 2) to abstain from treatment they do not want. In other words, the patients’ wishes are sought out, recorded down, and administered precisely, either to accept or to avoid certain treatments.
The form can be completed and signed by any provider who is in a treatment relationship with the patient. Treating providers include the primary care physician, consulting physicians, hospitalists, nursing home physicians, and emergency department physicians. There is no hierarchy that necessitates which type of provider should administer the form. The provider must, however, have knowledge of the patient’s medical condition, prognosis, and capacity to make decisions. The treating provider must, primarily, have a willingness to collaborate in discussion with the patient about their preferred choices.
The precondition of a willingness to collaborate is arguably the most important of the requirements because it embodies the very spirit behind the creation of the POLST form. A physician’s knowledge of the patient’s condition is obviously important, but their discussion with the patient is the mechanism that ultimately elicits the patient’s wishes. To that same end, while the patient must communicate their end-of-life wishes, the provider (on the receiving end) must determine to be both present enough to understand exactly what the patient is saying and astute enough to clarify any suspected confusion. Each of these requirements necessitates patience, ample time, and a commitment to pursue the patient’s wishes.
Therefore, it is not enough that a POLST discussion be simply provided by any admitting clinical staff member in a hospital setting. Not at all. Hospitals (and other medical providers) must continue their proactive efforts to guarantee that the staff member administering the form is also properly trained in compassionately eliciting a patient’s wishes. Further training is likely required to address instances where the urgency of a medical condition does not allow time for a full, proper discussion and decision-making by the patients. That is, the truly skilled clinician knows how to elicit the patient’s wishes (often through family members) rapidly, yet compassionately, in an emergent situation.
Above all, the medical community must continue to recognize the delicacy of the conversation between the provider and the patient. When administering the POLST form, both parties will likely recognize the reality which has brought them to this point of conversation. The physician, with all their training, faces a patient whom they know is in a life-threatening state. The patient, helpless and ill…cannot but feel the pungency of the declining state they face. Given the high emotional gravity of the situation (as well as the amount of time it takes to properly administer the form), it is crucial that medical providers seek training to understand what the questions on the POLST form mean and how to ask them appropriately. In doing so, clinicians will ease their personal anxiety about having these difficult conversations.
The POLST Form is available online for bulk orders or for free download at www.capolst.org. POLST California recommends the form be printed on bright neon pink cardstock paper to ensure it stands out in a thick medical record or when posted on a patient’s refrigerator (for both paramedic and family viewing).
Assessment
The purpose of the POLST Form is to facilitate communication between health care providers and their patients (or Legally Recognized Decision-Maker) regarding their personal end-of-life wishes and to also translate those wishes into clear medical orders. The POLST Form is written in a format to expedite review during an emergency situation. However, even though the form is designed to efficiently elicit information, the urgency of the situation should not dictate sacrificing a thorough collaboration between the physician and the patient. In other words, the importance of the questions being asked cannot be lost in the urgency in which they are presented. Hence, we recommend caregivers do advance planning with the patient and their families employing the POLST form.
The questions on the form are divided into four different categories, boxes A through D. For example, Box A elicits the patient’s wishes relating to Cardiopulmonary Resuscitation (CPR). The box details the possible scenario where the patient “has no pulse and is not breathing” and then directs the patient to choose what course of action they would prefer: Attempted Resuscitation (CPR) or Do Not Attempt Resuscitation (DNR) to Allow Natural Death (AND). While mechanically the decision is as easy as simply “checking” one of the boxes, the discussion needed to clarify the significance of each of the choices is quite complicated. Specifically, the medical provider should confirm that the patient understands what the word “resuscitation” means, what happens when resuscitation is not administered, and how that relates specifically to that patient’s personal condition.
The discussion can become even more complicated in scenarios where the provider, either personally or professionally, may disagree with the patient’s own choice. For instance, a physician may suspect that an elderly patient’s quality of life following a successful resuscitation would be difficult, and therefore diminished. However, the physician while imparting their professional knowledge, must try to not impart their own personal beliefs or bias on the patient. It is important to remember that quality of life is not an objective standard, but it is rather measured subjectively from person to person, patient to patient. The compassion behind the POLST form is that it empowers otherwise helpless patients to define the parameters of their quality of life and expectations moving forward.
A REFLECTION…
Each hospice patient we encounter is important and unique. Similar diagnoses can have predictable outcomes, but we must never assume that patients will have the same experiences, want the same treatments, or understand what “quality of life” is in the same way. For me, as a care provider, I must surrender my own ideas about “quality life” and fully support my patients in their own understanding of what makes life beautiful to them.
For example, I once cared for a 96-year-old patient who was gravely ill. She was disoriented, quickly declining after a long illness, and could no longer eat on her own. Her family wanted to begin artificial nutrition through a g-tube. To be honest, this is not the choice I would personally make for my loved ones, but the decision was not mine to make or to influence. As her medical team, we discussed the potential negative consequences and generally of no real benefit at this stage of life, including discomfort from the placement of the tube and the risk of complications, but the family was confident in their decision, the patient indicated her consent, and nutrition/hydration was started.
Weeks went by. Our patient became less responsive and died peacefully with her family at bedside. It would be easy to look back and critique her eight weeks as simply “lingering...” But to do so would negate the value of the experience she and her family had together in those final days. While she lay motionless in her hospital bed, with barely the strength to open her eyes, memories and laughter were shared, hands were held, tears shed, prayers lifted heavenward, and steps toward mutual forgiveness granted. I cannot measure the “quality” of her life in those last weeks, but the quality of her death cannot –should not— be denied.
Kendra Oliver, MBA
As discussed in the first article in this series, “How to Start the Conversation,” the POLST Form is best discussed bottom-to-top, reading from Box D up through Box A, rather than from top-to-bottom.
Box D – Information and Signatures
The recommended question to start the POLST conversation is “Have you thought about who would be able to make decisions for you if you were unable?” This question is very important. It allows the provider to quickly assess the patient’s previously designated wishes and their understanding of their medical condition, and to identify the surrogate decision maker (when one exists). As of 2017 an estimated 47% of all US adults over the age of 40 had completed an Advance Directive. This percentage increases to 54% for those over the age of 60. That is, approximately 50% of adult patients will already have thought about and documented their end-of-life wishes – making this initial question in conversation critically important (as well as timesaving). The provider should obtain a copy of the Advance Directive for the medical record, along with creating a POLST Form that mirrors the patient’s wishes. Bear in mind that the patient’s declining medical condition may create a need to update or intermittently change the Advance Directive/POLST.
Box C – Artificially Administered Nutrition
Box C addresses Artificially Administered Nutrition. It seems rather benign to administer nutrition through a feeding tube. It seems benign because we think feeding someone can ‘never be wrong.’ The truth about this is very different. Consumption of food orally has the greater pleasure of taste (which by all accounts is one of the best experiences of the human existence). It is also a powerful part of our social experience – the sharing of meals with one another. When individuals are placed on artificial nutrition, which is most commonly achieved by the placement of a gastrostomy tube, the pleasure of taste is gone, and socialization is markedly reduced. In fact, many individuals with feeding tubes are isolated even in the home or nursing facility environment. That is, a bag of nutrients is attached to a pump and then set for automatic delivery over the course of 4-8 hours (until the bag is depleted, and the next bag hung). During this time, patients are often left in isolation lying in bed feeling alone. Not only are they alone, but they can no longer enjoy the taste of the food keeping them alive, nor the comfort of anyone to share it with. In fact, without the need to ambulate the patient to the dining hall for meals, physical deconditioning quickly takes place and further isolates the individual. In advanced dementia (Alzheimer’s Dementia, Lewy Body Dementia, or Senile Degeneration Dementia), the swallowing mechanism often fails leading to weight loss and aspiration pneumonia. Feeding tubes are most commonly placed in this population. However, extensive studies involving more than 80,000 patients have shown that artificial nutrition does not prolong life, nor does it reduce aspiration events. This is contrary to what some would consider as common sense: “If you are not eating enough, providing artificial nutrition will prolong life,” or “If you are aspirating (food), then placing a feeding tube will stop that process since nothing will be given orally by mouth.” NOTE: Neither of these statements is true.
In advanced dementia, the metabolic process declines, which results in continued weight loss despite adequate caloric intake. For recurrent aspiration events, stopping oral intake does not change aspiration risk at all. The reason is that aspiration occurs predominately from saliva and nasal secretions (not the solid oral intake). The proper protocol to reduce aspiration risk is to keep the head of the bed elevated, to avoid over-sedation, and to provide the correct consistency of the diet.
The main reason for placing feeding tubes in patients with advanced disease (most commonly dementia or CVA) is societal pressures on family members; it is not appropriate to starve a loved-one. Compounding this is often the provider’s false belief that the patient will benefit from artificial nutrition, meaning that they will live longer or stop aspirating. Providers should discuss the negative consequences and non-beneficial impacts of artificial feeding in order to help patients and their families make an informed decision. Box C states, “Offer food by mouth if feasible and desired.” The wording here is interesting. It is always desired, but not always easily feasible. For example, careful hand-feeding of individuals with dysphagia is preferred, but requires a serious time commitment by facility staff or family. Whenever possible, this is the preferred method for maintaining nutritional intake during a patient’s decline, because the social isolation is avoided, and the taste of food is still enjoyed.
Box B – Medical Interventions
Box B, Medical Interventions, is probably the most important question on the POLST Form. Because, as we discuss below, survival from Code Blue is relatively low. The likelihood that a patient’s condition will worsen resulting in the need for hospitalization is much greater. As we know, near the end-of-life, patients tend to have more and more hospitalizations until they either die in the hospital or choose Comfort Measures and, more likely, pass in their own bed at home. Comfort-Focused Treatment (hospice) as stated on the POLST Form has the “primary goal of maximizing comfort.” This goal generally serves as a “Do Not Transfer” (to the hospital) order as the patient elects to be treated in the current location (home, board & care, or SNF). Interestingly, when asked about their care preferences should they ever develop advanced dementia, healthy individuals over the age of 40, selected Comfort Care 50% of the time. When shown videos of patients with advanced dementia, the number of individuals selecting Comfort Care increased to 89%. Similarly, when the same information was presented to patients with advanced cancer, 22% selected Comfort Care. Yet after watching a video about end-of-life decisions, this number then grew to 91%. The point here is not that we need to use videos to help patients in their decision-making process, but rather that the quality of information delivered by the provider has a very significant impact on patients’ understanding of the question and their ultimate decision.
Box A – Cardiopulmonary Resuscitation
Box A, Cardiopulmonary Resuscitation (CPR), begins with the following words: “If a patient has no pulse and is not breathing…” Here, the average person may not know that this essentially means that medical death has occurred. It is a provider’s job to help patients understand this statement and what exactly is being asked of them. Specifically, medical providers should explain that if the patient has no pulse or is not breathing at home or elsewhere, death has occurred. In the hospital setting, likewise, providers should also clarify that even when death has occurred, Cardiopulmonary Resuscitation may bring some individuals back to life.
Continuing on in the Box, next to “Do Not Attempt Resuscitation/DNR” is a very important phrase that should become part of the medical lexicon, “Allow Natural Death.” Most individuals with chronic illness prefer a natural death. Providers should embrace the dying process as it occurs naturally and focus on providing compassionate end-of-life care and comfort. For those that choose Full Code (Attempt Resuscitation/CPR), it is important to understand what conditions define Code Blue survival; generally, it means that the patient has a pulse at some point shortly after the Code Blue (usually at the end of the code). But that’s all it indicates. Conversely, the patient might have suffered anoxic brain damage, may not have spontaneous respirations (on a ventilator), may have a blood pressure supported by vasopressors, and even the pulse may be driven by artificial means or medications. So survival from Code Blue has little meaning to what a patient might understand as “survival.” It does NOT mean that the individual survived the hospitalization, nor indicate if they did under “what condition did they ‘leave’ the hospital?” Many die during the hospitalization, while a few survive the hospitalization to leave the hospital – but most likely, they don’t walk out under their own capacity. It is more likely that they were taken by an ambulance to a nursing facility where they will die a few months later (maybe never having regained consciousness). Yet in the medical literature, these are all considered “Code Blue Survivors” and “Hospital Discharges.”
Multiple studies have shown that when seniors, who had previously selected Full Code, are presented with true statistics on Code Blue survival, nearly 50% of study participants afterward opted to change their Code Status to DNR (Do Not Resuscitate). Specifically, when asked about expected survival, participants guessed it to be about 60%. But in fact, Senior Code Survival is actually documented in multiple studies to be less than 20% (17.2% in this study). This fact again emphasizes that providers must share accurate information with their patients to assure that their patients’ choices are informed, elucidated, and documented on the POLST Form.
Although Code Blue survival rates have remained unchanged over the last 2 decades, the chances that a Code Blue survivor will leave the hospital have actually increased. Presently, only 18-20% of Code Blue survivors actually leave the hospital. Therefore, Code Survival to Hospital Discharge (DC) for seniors can be calculated as 20% Code Blue survival x 20% Hospital DC alive = 4%. That is, for seniors, only 4% of Code Blue efforts result in survival until hospital discharge. As stated previously, instead of heading home, the majority of these individuals (60%) will be headed to a rehabilitation center, or hospice for their remaining days of life.
For clarity, at a major university medical center, 100 Seniors suffered cardio and/or pulmonary arrest resulting in a Code Blue; Only 20 survived the Code Blue resuscitation attempts; 16 of these 20 individuals died in the hospital over the next few days despite having survived the Code Blue resuscitation. So only 4 individuals of the 100 Seniors were, subsequently, discharged from the hospital. The other 96 died. Going out further, of the 4 that made it to hospital discharge, only 1 was alive and well at 1 year from the hospital discharge.
What are characteristics of a Senior who is the most likely to survive a Code Blue resuscitation, make it to hospital discharge, and be alive and well 1 year later? Pulseless V-Tach Arrest (without Respiratory Failure) which responded to electrical defibrillation.
Recommendations
The Importance of the Questions: Health care providers should take note that the only way to understand a patient’s wishes for their end-of-life care is to take the time to compassionately explain what the questions on the form actually mean in practicality. The providers must also be committed to securing the patient’s wishes even when they personally or professionally may disagree with the decision, and must be comfortable explaining the truth of the statistics behind the medical treatment to the patient’s loved-ones. This recommendation is based on the expert opinion of the authors.
Health care providers should adapt the conversation concerning Box A stated as the following question: “Do you understand what the word ‘resuscitation’ means?” This is a much more organic way of leading into the choices asked for next, which seeks the patient’s decision on whether or not they want to be resuscitated. Of course, preliminary questions of this nature demand more time from the provider administering the form, but they serve the vital importance of obtaining an educated and informed response from the patient. The medical provider should also take the time to consider whether the patient is engaged in the conversation and if their responses are genuine, as opposed to dismissive answers which could be the result of current confusion or pain.
As discussed above, if the patient chooses to “Allow Natural Death (DNR)” the provider must honor the decision, even if they would be personally or professionally inclined to attempt resuscitation. The goal is to focus on the fact that POLST exists to serve the end-of-life wishes of the patient and that their desires must honored and respected.
Sometimes, it may be the case that honoring and respecting the patient’s choices requires an in-depth discovery into any other requests that they may have. Box C, addressing “Artificially Administered Nutrition” exemplifies this scenario. Box C specifically includes a section that allows for “Additional Orders” by the patient. An inappropriate and rushed discussion with the patient would likely include the following type of question, “Do you have any additional orders?” However, the problem with this question is that it does not set the parameters of what additional orders are available to the patient. More clarity needs to be provided. Is the patient being asked about the type of nutrition in the tubes? Dietary restrictions? Time restrictions? It is difficult to tell. A more compassionate question, one which truly seeks to understand the patient’s desires for their own end of life treatment, might be asked this way instead: “Do you have any other specific requests when it comes to your nutrition…? For example, is there a time-frame when you would want to discontinue the nutrition…? Do you have any nutritional needs or restrictions we are not aware of...?” Here, the physician still guides the conversation by applying their own expertise but broadens the scope of the questions with more detail to define the patient’s end-of-life needs more succinctly.
Another article of this series on POLST will explore “The Patient Experience.”
References
1. POLST Education. Retrieved October 2018 from https://familydocs.org/eol/education/polst
2. California POLST Form. Retrieved September 2018, from https://capolst.org/wp-content/uploads/2017/09/POLST_2017_Final.pdf
3. The Physician Orders For Life-Sustaining Treatment (POLST) Coming Soon To A Health Care Community Near You, Robert B. Wolf, Marilyn J. Maag, and Keith Bradoc Gallant, Retrieved October 2018 from
http://www.polst.org/wpcontent/uploads/2014/11/WolfMaagGallantVol49No1.pdf
4. The Coalition for Compassionate Care of California. POLST for Healthcare Providers. – Legislation & Public Policy. Retrieved September 2018, from https://capolst.org/polst-for-healthcare-providers/
5. California Health Care Foundation. (2009, January). CHCF Directs $2 Million to Spur Adoption of New End-of-Life Communication Tool - Recently approved POLST form gives seriously ill patients greater ability to control medical treatment. Retrieved September 2018, from https://www.chcf.org/press-release/chcf-directs-2-million-to-spur-adoption-of-new-end-of-life-communication-tool/
6. Dunn, P.M., Tolle, S.W., Moss,A.H., and Black, J.S. (2007, September). The POLST Paradigm: Respecting the Wishes of Patients and Families. Annals of Long-Term Care, 15 (9), 33-40. Retrieved September 2018, from http://www.polst.org/wp-content/uploads/2013/01/the+polst+paradigm+respecting+wishes.pdf
7. Pope, T.M., Hexum, H. (2012). Legal Briefing: POLST: Physician Orders for Life-Sustaining Treatment. The Journal of Clinical Ethics, 23(4), 353-76. Retrieved September 2018, from https://pdfs.semanticscholar.org/a142/bc9501f50610297654e085eeb9752da72e34.pdf
8. IOM (Institute of Medicine). 2015. Dying in America: Improving quality and honoring individual preferences near the end of life. Washington, DC: The National Academies Press.
9. Cantor, M.D., et al. (2002, August). To Force Feed the Patients With Dementia or Not to Feed: Preferences, Evidence Base, and Regulation. Annals of Long Term Care, Volume 10, Issue 8.
For additional information please contact Dr. Max Diamond at 714-221-5182 or mdiamond@regalmed.com.
