Making Your Choices Known
Let’s be honest, the last thing anybody wants to chat about over dinner is the topic of dying. But the family dining room table is actually an ideal setting to begin such a sensitive conversation. It’s where we’re surrounded by those who know us best, love us most, and will likely be with us to the end. Our loved ones are the people who should have the clearest sense of what we want in our final phase of life.
But how will they know if we don't tell them?
National Healthcare Decisions Week is April 16 to April 22. National Healthcare Decisions Day (historically April 16) exists to inspire, educate, and empower the public and proviuders about the importance of advance care planning.
“In our society, there is denial about the end of life; an assumption that it won’t happen soon, so there’s no need to address it right now,” notes James Florey, M.D, medical director for Brown & Toland. “But when we put off decisions about death and dying, they tend to get made in a crisis – often in a hospital setting when the patient is incapacitated.”
In some end-of-life scenarios, says Dr. Florey, keeping a person comfortable is a more compassionate way to deliver care than aggressively treating them. This is particularly true for elderly and terminally ill patients, who may experience increased suffering as a result of dramatic attempts to keep them alive. Experiencing the end of life in one’s own home is often preferable to dying in a hospital bed surrounded by machines.
Those patients who feel strongly about receiving all available life-sustaining treatments, even in the face of a terminal prognosis, should document those preferences to ensure that family members and healthcare professionals understand them.
“Our goal is to deliver end-of-life care that will meet all of our patients’ chosen needs in a way that will enhance the quality of life for patients and their loved ones while respecting individual lifestyles, religious beliefs and cultural contexts,” states Dr. Florey. “The best way for us to know what our patients want is for them to put things in writing.”
There are two different types of paperwork that allow patients to specify their wishes about end-of-life care: an advance healthcare directive and a Physician Order for Life-Sustaining Treatment (POLST) form.
Below, Dr. Florey delves more deeply into this subject by answering key questions about the value and power of making your wishes known and the documentation that speaks for you if you are unable on your own behalf.
Q: What is the best way to define compassionate care?
Dr. Florey: Compassionate care is about following a patient’s wishes on what medical interventions he or she wants – or does not want – at the end of life. The term “compassionate” is part of the phrase because, as doctors and nurses, we want to be compassionate when it comes to what patients want, rather than automatically defaulting to treatments and technologies simply because they are medically feasible. The term “care” is included because this is an opportunity for us to deliver personalized care to our patients based on their specified preferences. People have a right to choose for themselves what they want at the end of life. In the face of a terminal diagnosis, some want to be kept alive no matter what; others prefer the idea of shifting from aggressive treatment to a palliative approach where the priority is keeping them comfortable.
Q: What role do physicians take in this process?
Dr. Florey: Brown & Toland encourages dialogue between patients and their doctors to talk about these important end-of-life issues. Our goal is to make sure our patients really understand their options.
Q: Why is this subject suddenly getting so much attention?
Dr. Florey: Most Californians – approximately 70%, according to recent studies – report that they would prefer to die in their own homes, naturally and peacefully. Far too many people, however, end up dying in the hospital following aggressive courses of treatment. Similarly, more than half of Californians say that it is extremely important to them that their end-of-life medical care wishes are followed, yet less than a quarter of us put our wishes in writing.
Q: What’s behind these disconnects?
Dr. Florey: In emergency situations, patients are likely to get rushed to hospitals for treatment unless they’ve previously documented that they don’t want such measures taken. In the absence of the proper paperwork, and when family members don’t know the patient’s wishes regarding end-of-life issues, doctors and nurses will always intervene to try to keep the person alive. Events such as National Healthcare Decisions Day, and week, is designed to provide patients with information for helping them put their wishes in writing.
Q: How does the concept of “quality of life” factor into this discussion?
Dr. Florey: When we talk about compassionate care, we explore the distinctions between extending a person’s life and evaluating how much quality that person can actually get out of life in its final stage. Each of us has the right to decide what “quality of life” means to us, and it’s important to recognize that different people define that idea very differently. During healthy phases of life, we are freer to pursue activities that make us happy and fulfilled. But at the end of life – including in extreme situations such as when patients are placed on life support or when they receive aggressive treatments that can actually cause suffering – those same opportunities are no longer available to us. When patients think about what they would want in such scenarios then communicate those wishes clearly, it gives doctors, nurses and family members a clearer sense of what “quality of life” means for them. For healthcare professionals, the best outcome is always the one that enables a better quality of life for our patients.
Q: How do people document their wishes?
Dr. Florey: The best way for people to document their wishes about end-of-life care is by filling out an advance healthcare directive and a POLST form.
Q: What is an advance healthcare directive?
Dr. Florey: This is a document that allows anyone, including perfectly healthy people, to clarify general health-related preferences in writing. In California, it’s divided into two parts: the first is a durable power of attorney for healthcare and the second is a living will. The durable power of attorney lets you name someone you allow to speak on your behalf if medical decisions have to be made when you are unable. The living will lets you state your wishes regarding life-sustaining care and nutrition if you are incapacitated by illness or injury. The advance healthcare directive can be filled out by anyone over the age of 18. Typically, it’s kept with other legal documents at home or in an attorney’s office. In other words, it’s not often readily accessible when people are in emergency situations in the hospital.
Q: What is a POLST form?
Dr. Florey: The POLST form is designed for people who are elderly or seriously ill. However, anyone who wishes to can complete one. The “P” in POLST stands for physician, so it’s meant to serve like a doctor’s orders that reflect the specific wishes of the patient. Like an advance healthcare directive, the POLST documents a patient’s preferences about cardio-pulmonary resuscitation (CPR), life support and nutrition. But it has to be signed by the doctor as well as the patient (or the patient’s legal surrogate) and is considered legally binding. The other important difference is that the physical POLST form should never be far from the patient. An official copy – always printed on sturdy bright pink paper – should be posted on the refrigerator at home where first responders know to look for it, and a mini version of the form should also be carried in the patient’s wallet. It also becomes part of the patient’s official health record in the doctor’s office. That way, wherever and whenever that person might experience a potentially life-threatening emergency, the POLST will answer all the necessary questions about how aggressively healthcare professionals should intervene.
Q: Where can patients get these forms?
Dr. Florey: Brown & Toland primary care physician offices should have blank copies of the POLST form. Also, the POLST and the official California advance healthcare directive forms are available online. Visit http://capolst.org/polst-for-patients-loved-ones/ andhttp://oag.ca.gov/sites/all/files/agweb/pdfs/consumers/ProbateCodeAdvancedHealthCareDirectiveForm-fillable.pdf for more information.
Q: What do physicians want patients to know about CPR?
Dr. Florey: Movies and television shows would have us believe that getting CPR is no big deal; that everyone who is resuscitated can expect not only to live through the experience but to emerge from it unharmed. Unfortunately, that’s not the reality, especially when we’re talking about older and seriously ill patients. Studies show that only 17% of patients who receive CPR in the hospital survive, and only a small percentage of those people walk away with no lingering effects. In other words, the vast majority of hospitalized patients who survive CPR end up with some degree – sometimes a catastrophic degree – of physical and/or neurological damage.
Q: What does CPR have to do with compassionate care?
Dr. Florey: Compassionate care is all about making your wishes known given various medical scenarios, especially those at the end of life. Understanding the facts about CPR and its success rate is part of being knowledgeable about an all-too-common scenario; it’s something that older or seriously ill patients often endure against their wishes if they haven’t put those wishes in writing. Healthcare professionals and EMTs will always attempt resuscitation unless a POLST is available or a person with DPOAHC is present to instruct them to follow the instructions of the POLST.
Q: Nobody wants to think about dying. Wouldn’t it be easier to let nature take its course and skip the forms?
Dr. Florey: I agree that this is not an easy topic to ponder. Still, dying is a part of living. So putting a little thought into what you would want and then documenting those preferences provides clarity for everyone involved. Having an advance healthcare directive and POLST form gives people the power of knowing they will always have a voice, even in their final days. We think of it as an element of lifecycle care. Advance planning is part of good living.
 “Final Chapter: Californians’ Attitudes and Experiences with Death and Dying,” California HealthCare Foundation 2012, Dartmouth Atlas Project and New America Foundation. “End-of-Life Care in California: You Don’t Always Get What You Want.” www.chcf.org/publications/2013/04/eol-what-you-want