As a critical care physician, I am often involved in the care of patients who are dying. And I am distressed by the frequency of cases involving profound suffering that, I believe, could have been avoided. In that vein, I want to lay out some steps that will empower you to step around the many landmines that are buried in the weeds of chronic and critical illness.
For most of us, getting clear on our preferences at the end of life is a process–one best dealt with well before you find yourself, or someone you love, in a critical situation. I realize that most people are unfamiliar with the various terms, documents, and choices available to them. Even my mother, a former physician was confused by some of the terms and concepts used. And if she’s confused, I know many others must be, too.
I hope that this vocabulary list will serve as an excellent primer for learning how to take responsibility for your own health, and to live the way you want to live, from the beginning right until the very end.
Here is a short list of need-to-know terms:
Life-prolonging treatments: Invasive treatments that may prolong your life. These can include a breathing machine (ventilator), chest compressions, shocking the heart (defibrillation), dialysis if you have kidney failure, and artificial nutrition through tubes in the nose or inserted into the stomach, among others. These treatments do not cure the underlying illness, but rather are directed towards keeping the body alive longer.
Goals of Care (GOC): These identify the type of medical care desired by the patient. Ideally, the GOC are defined by the patient himself. If the patient is not capable of making decisions, the GOC will need to be determined by the surrogate decision maker. There is a wide spectrum of possible GOC, with focusing on comfort care at one end, and prolonging life at all costs at the other (including the use of potentially life-prolonging interventions). Often, GOC fall somewhere in between these two—an example I often see is a patient wanting to avoid being placed on a breathing machine, but willing to accept other types of life-prolonging treatments such as dialysis or antibiotics.
Comfort Care: Medical care that is focused on relieving symptoms to maximize comfort. It does not aim to cure or treat underlying illness or disease, nor does it usually involve interventions designed to prolong life. It is generally synonymous with Palliative Care (see below.) It is most often chosen by patients with progressive terminal conditions unlikely to improve with disease-specific treatments (such as chemotherapy for cancer or breathing machines for end stage lung disease).
Palliative Care: Same goals or meaning as comfort care. Primary Palliative Care refers to comfort care approaches provided by whichever doctor (hospitalist, cardiologist, etc.) is caring for the patient. Specialty Palliative Care is provided by physicians with formal training in Palliative Care medicine. It is a common misconception that Palliative Care is only for patients who are dying or suffering from terminal illness. On the contrary, Palliative Care can be helpful for many conditions, including chronic pain and nausea from chemotherapy. And many studies have shown that Palliative Care helps patients who are dying live better—and longer—than patients who don’t receive it.
Hospice: A philosophy of care that can be provided in a person’s home (80 percent of the time) or in a medical facility, including dedicated hospice residences. Hospice services are not provided in a hospital; instead, Palliative Care services would provide that type of support. Hospice’s purpose is to provide palliative care or comfort care for patients nearing the end of their lives. To qualify, you must have determined that your goals of care are for management of symptoms and enhancement of quality of life and be willing to forego further disease focused treatments like chemotherapy, which are no longer covered when you switch to a hospice approach. In addition, your doctor’s referral must state that you have a prognosis of six months or less. However, you will not be discontinued from the program if you live longer. Some people even “graduate” from hospice if their health improves significantly. You need a physician referral to enter the program.
Advance Directive (AD): A form that legally identifies a surrogate decision maker to make decisions for you if you are unable to do so. This form must be notarized or signed by two witnesses. It also designates your preferences about organ donation. Most important, it contains a “healthcare directive” section, which provides checkboxes that indicate your preferences for healthcare in situations where you are unlikely to attain a certain basic quality of life. I find this healthcare directive section to be simplistic, and have written a few paragraphs further clarifying my specific preferences in a variety of “what if” situations. I believe that ADs should be completed by every adult starting in young adulthood, and reconsidered or revised annually—or more frequently if there are changing medical issues.
Do Not Resuscitate (DNR): This is a doctor’s order, which follows a patient or family request, stating that a patient in a hospital or nursing home should not receive aggressive treatments to restart their heart and blood circulation (such as chest compressions and electric shocks of the chest). It is only good for the duration of that particular stay in a medical facility.
Do Not Intubate (DNI): As with the DNR, the DNI is a doctor’s order, following a patient or family request, stating that a patient in a hospital or nursing home should not be placed on a breathing machine if her lungs are failing. It DOES NOT mean that patients won’t be treated with oxygen or medications to treat shortness of breath if those are helpful. As with the DNR, it is only good for the duration of that particular stay in a medical facility.
Pre-Hospital Do Not Resuscitate (DNR) Form, also called a POLST (Physician’s Order regarding Life Sustaining Treatments): Like the DNR and DNI, this is also a doctor’s order reflecting patient and family wishes. However, unlike the DNR and DNI, which are only valid for a given stay in a healthcare facility, and require renewal with each transfer or admission, the POLST is “portable,” meaning that is valid not only in a medical facility but also in your home, an ambulance, and most states in the union. This document must be signed by your physician to be valid. It lays out which life-prolonging treatments you would prefer to receive or refuse. This is a very important step for those who do not wish to receive the default aggressive treatments that are typically employed to prolong the lives of critically ill and dying patients. The form is bright pink and usually displayed in areas that can easily be seen by paramedics and EMTs. Some people additionally choose to purchase a metal medallion from MedicAlert with the correct documentation. This is usually worn as a bracelet and has the same effect as a POLST in that it is recognized by first responders as a physician’s order.
So… Now that you understand some key terminology, what should you do next?
Step 1) Determine your goals of care (GOCs). If you have a terminal illness (end-stage cancer,[MH1] advanced dementia, severe organ dysfunction), would you want to receive invasive attempts to prolong your life, or would you prefer to maximize quality of life and comfort and allow a natural death?
Step 2) Discuss your GOCs clearly with everyone you know, especially if you do not wish to receive life-prolonging therapies. Determine whom you would want to act as your surrogate decision-maker if you were no longer able to speak for yourself. Complete an Advance Directive form to those effects and get it witnessed by two people or notarized.
Step 3) If you do not wish to receive life-prolonging therapies, fill out a POLST/Pre-hospital DNR form TODAY. An Advance Directive alone does not assure that you won’t receive life-prolonging treatments. For example, if emergency services are summoned, they may not find or be able to quickly interpret an Advance Directive. Unless there is a clearly-appointed surrogate waving her arms to prevent these treatments, they will “err on the side of the patient” (this is the language used on the ca.gov EMS page) and proceed with life-prolonging treatments. Most of the time, ADs haven’t been filled out, or haven’t been correctly witnessed, and there is no surrogate present to wave arms. Remember, your physician may not know what a POLST form is, so you may have to print it yourself and bring it to your doctor for signature. It must be signed by her/him to be valid.
Step 4) If you have a POLST/Pre-hospital DNR form, keep it in multiple locations in your house and give copies to any and all surrogates. Make sure people know that you have this form. DO NOT RISK its absence at a crucial moment. The forms can get lost in the shuffle, with potentially disastrous consequences, so make sure they are easily visible and accessible. EMTs and paramedics, like their physician counterparts, often don’t know about them. The social worker on our palliative care team said that her son, an EMT, had to teach his entire squad about their existence. If you will be traveling, it is recommended that you contact the public health department in that state to understand their EMT services approach to this issue. If you’re traveling out of the country, be sure to research in advance to know your options in case of emergency.
Step 5) If you have a POLST/Pre-hospital DNR form or a medallion, remember that you will still be treated for any symptoms—like pain or shortness of breath—using medications as needed. If your symptoms are not getting adequately treated, demand that they get attended to, even if you have chosen to pursue comfort care as opposed to disease focused care.
Step 6) If you have a terminal illness, you may consider asking your doctor whether or not hospice services would be helpful. If you qualify for and enter hospice, you have an added layer of protection against receiving unwanted life-prolonging treatments. Hospice workers will help you complete any of the above forms.
Negotiating choices and preferences at the end of life is a process—but by reading this, you’ve already set yourself firmly on the path. My wish for all of my patients—indeed for every one of us—is to take responsibility for our health in order to live the way we want to right up until the very end.