The Art of Dying Well

by Katy Butler

  Do Not Hospitalize (DNH) or Do Not Transport (DNT): Physicians’ orders to prohibit you from being transported to a hospital, so that you can die in the place that has become your home. This order is often part of a POLST.

  Do-not-resuscitate (DNR) or allow natural death (AND) order: A doctor’s order forbidding cardiopulmonary resuscitation; it is difficult to get a doctor to write a DNR unless you have a terminal illness.

  Dying: A word many doctors avoid, instead preferring to say multiple organ systems failure, advanced, or end stage.

  Edema: Swelling from retained fluid.

  Emesis: Vomiting

  End stage: Medical language for approaching the end of life, usually due to a slowly moving disease, such as congestive heart failure, emphysema, or kidney failure. The term has no precise medical meaning, but when doctors use it, they usually think death is likely within six months. If your doctor uses this phrase, ask him or her to explain in more detail what he or she means, and ask about hospice. You will probably qualify and do considerably better with its services.

  End stage renal disease (ESRD): Kidney failure, in which the kidneys lose the ability to filter toxins from the blood. Without dialysis or a kidney transplant, ESRD leads, usually within months, to a relatively painless death, marked by fatigue, mental confusion, and a gradual slipping into unconsciousness.

  Euthanasia: Mercy killing. From the Greek, meaning “a good death.” It is now used to mean having one’s life ended involuntarily by medical means, which is illegal. The term is also sometimes inaccurately used to describe the voluntary timing of one’s own death with prescribed medications, which is legal for the terminally ill in several states and is better known as aid-in-dying or physician-assisted death.

  Evidence-based medicine (EBM): Making clinical decisions on the basis of scientific evidence that a treatment is effective. At its best, EBM leads to abandoning ineffective treatments and making medical care more consistent in large health systems; at its worst, it devolves into cookie-cutter medicine done by algorithm rather than by developing a healing relationship between doctor and patient.

  Failure to thrive: An official catchall medical diagnosis overlapping with “the dwindles” and advanced frailty, characterized by a weight loss of more than 5 percent, poor appetite, weakness, and low energy. When not caused by dehydration, depression, or another correctable cause, failure to thrive is often a harbinger of the final decline. On its own, it is no longer a hospice-qualifying diagnosis. Privately, doctors sometimes use circling the drain.

  Fatal: Another word doctors don’t like to use, instead preferring terminal, progressive, serious, chronic, or end-stage.

  Feeding tubes or PEG tubes: Delivery of nutrition via a tube through the nose or implanted directly in the stomach. Nursing homes find them convenient and well-reimbursed, but when people have lost the ability to swallow due to dementia, feeding tubes are devastating to their quality of life. Side effects include delirium, bedsores, agitation, and swelling. Many patients must be drugged or tied down to prevent them from pulling the tubes out. Their use in patients with end stage dementia, especially in those who have someone to speak for them, is declining.

  Frailty: Physical fragility shown by slowing down, needing help from others, and losing resilience. Those with “mild frailty” need help with shopping and bill paying. Those with “moderate frailty” also need help with cooking meals, climbing stairs, and keeping house. Those with severe frailty are completely dependent on others, but in seemingly stable health. Those with “advanced frailty,” described as “very severely frail,” could not recover from even a minor illness and are likely to die within six months.

  Frequent flyer: Crude hospital slang for a frail older person who repeatedly comes to the emergency room. Also called a crock, a crumble, or a GOMER (Get Out of My Emergency Room.)

  Geriatrician: A specialist in the health problems of older people. A valuable, poorly paid, and endangered species.

  Goals of care: How medicine might help you accomplish what matters most to you when cure is not a realistic hope. If a doctor wants to discuss “goals of care,” it usually means that he or she thinks it’s time to shift from cure-oriented, sometimes grueling treatments to relieving your suffering, finding out how you would define a good quality of life now, and preparing for the best possible death.

  High-value care: A philosophy of medical reform, judging performance not by the number of tests or procedures performed, but by whether or not the patient actually gets healthier. Similar in approach to patient-centered care or person-centered care, but more concerned with cost.

  Hospice: Taken from the French word for a medieval inn sheltering travelers and religious pilgrims, the word now has three interrelated English meanings. The original definition is a freestanding residence for the care of dying people. The second is the philosophy and practice of attending to the physical, emotional, medical, and spiritual needs of people approaching the end of life. The third, in the United States, is an insurance benefit providing a package of medical services to people in the last six months of life. Hospice nurses, social workers, doctors, and chaplains visit patients in private homes, nursing homes, hospitals, or freestanding residential hospices. Their focus is on relieving suffering, supporting caregivers, controlling pain, and providing spiritual, emotional, and physical comfort. To be eligible for the Medicare hospice benefit, people must agree to stop all curative treatments. Some private insurance covers a full year “on hospice” and allows parallel use of some curative treatments.

  Hospital delirium: Confusion, memory loss, and hallucinations that result from the stress of illness or a hospital stay. It was once thought to be a temporary state, but those who suffer it are at increased risk of developing dementia, of dying within a year, and of permanently losing mental function.

  IADLs: Instrumental activities of daily living. See ADLs.

  ICD: An implanted cardiac device. See pacemaker or defibrillator.

  “I don’t have a crystal ball”: A phrase used by doctors to express uncertainty and discomfort when asked where things are heading, or how much time is left. Ask for a sketch of the typical course of your illness, and whether you have “days, weeks, months, or years.” Further precision is rarely accurate.

  Incurable: A word doctors now rarely use, preferring “chronic,” “progressive,” or “terminal.”

  Law of double effect: A moral principle articulated by the medieval Catholic theologian St. Thomas Aquinas, declaring that actions should be judged by their primary purpose, even if they also unintentionally cause a lesser harm. This “law” is widely used to justify giving morphine to the dying to relieve pain, even if, by depressing breathing, it may slightly hasten death.

  Medical aid in dying (MIA): Proponents’ phrase for legalizing the right of terminally ill people to obtain lethal prescriptions to time their deaths. Also called end-of-life options, the right to die, death with dignity, and physician-assisted dying.

  Medical Power of Attorney: See POA or Proxy.

  Metastases or Mets: Cancers that have spread to new places in the body, a sign the disease has progressed to stage four, is incurable, and will eventually be fatal.

  MOLST (Medical Orders for Life-Sustaining Treatment): Signed by a doctor and more likely to be honored than an advance directive, a MOLST lists detailed treatments to be allowed or avoided. An invaluable document for anyone in the last years of life, or with an incurable illness. See also POLST.

  Moral distress: The emotional and spiritual pain of medical staff forced, by hospital protocols or by patients’ families, to do things to patients that cause suffering and violate the clinician’s moral values. Often used to describe the anguish of nurses attending patients who are slowly and painfully dying in an ICU.

  Multiple co-morbidities: Coexisting incurable, worsening illnesses, such as diabetes plus heart disease plus emphysema. Surgical risks rise exponentially, and the long-term outlook is poor.

  Multiple organ sys
tems failure: Organs vital to sustaining life (such as the liver, kidneys, lungs, and brain) are shutting down. Sometimes a medical euphemism for “dying,” and often a precursor to it.

  Nosocomial (condition): A health problem (including death or disability) caused by hospital treatment, including medication mixups, avoidable “complications” after surgery, hospital-acquired infections, and hospital delirium. Synonym: iatrogenic.

  Overdiagnosis: Calling a physical condition a “disease” and treating it, even if it doesn’t make you feel ill and will never do so, because of a non-normal or elevated result on a health screening, such as a PSA, blood, or thyroid test. Improved imaging has lowered the “thresholds of normality” for many conditions. Overdiagnosis wastes money and time, causes unnecessary worry, and frequently leads to overtreatment.

  Overtreatment: Tests, drugs, and treatments that do more harm than good, because the “cure” exposes the patients to worse risks than the “disease” ever would. Treatment to satisfy a need or goal of someone other than the patient. “Treating the test” rather than the person.

  Pacemaker: An implanted device delivering regular, painless, tiny electrical pulses to the heart, to correct a slow pulse. They can improve quality of life by lessening fatigue and fainting. But they may also prolong the dying process and are unnecessary in the absence of symptoms. (See, “treating the test.”) If you are contemplating a pacemaker, it is important to discuss, with your doctor or nurse, an “exit plan” for painless nonsurgical deactivation when the device no longer serves your purposes. According to ethical statements issued by the major cardiology associations, deactivating a pacemaker is neither assisted suicide nor euthanasia. The decision is the patient’s to make.

  Palliative care: Medical care focused on relieving suffering and maintaining function, not on curing. Unlike hospice, it is appropriate at early stages of a serious or incurable illness, and can provide you with extra support, in parallel with cure-oriented treatments. It can help you maintain function, live a life worth living, and make empowered, informed decisions about your future medical care. In some health systems, palliative care is called supportive care, pain management, serious illness management, pre-hospice, or symptom management. Palliative care is not restricted to people within six months of dying who give up curative treatments. But it is often confused with hospice, because in some medical systems “palliative care” unfortunately means little more than having a doctor hold a last-minute conversation about disconnecting life support.

  Palliative chemotherapy and palliative radiation: These are treatments intended to manage symptoms but not to cure. Palliative radiation effectively reduces or eliminates pain from cancers that have spread to the bone. So-called palliative chemotherapy sometimes negatively affects quality of life.

  Patient representative: Hospital staff member charged with acting as a liaison and representing your concerns. If you have questions, complaints, or problems during a hospital stay, ask to see a patient representative, or the charge nurse.

  Patient-centered care or person-centered care: Another medical reform movement, intended to put the needs of the patient, rather than the convenience of doctors, nurses, and health systems, at the center of medical treatment and decision-making.

  Physician’s order: A plan for treatment signed by a doctor and usually followed by other doctors and nurses. A physician’s order or referral is required for a do-not-resuscitate order or a POLST, and to qualify for physical therapy, home health aides, and many other services reimbursed by Medicare or Medicaid.

  POA: Power of attorney. Shorthand for medical power of attorney, or durable power of attorney for health care, this is the person you have designated to be your medical advocate. Also called your Proxy, Health Care Agent, or Surrogate.

  POLST (Physician Orders for Life-Sustaining Treatment): A detailed doctor’s order of medical treatments to be allowed or prohibited. Also known as MOLST. Most useful for people with terminal illnesses or in frail health, and more widely respected than advance directives.

  Post-Operative Cognitive Decline (POCD): A loss of mental function, sometimes temporary and sometime permanent, after surgery. The risk of POCD rises with age, especially for those with existing cognitive impairments, and after open-heart surgery, general anesthesia, and hip replacement.

  Primary care doctor: A generalist, usually an internist, who provides continuing care, hopefully knows the patient well, and writes referrals for services such as physical or occupational therapy.

  Prognosis: A forecast of the usual course of your illness. In practice, prognosis often means bad news, and is often paired with words like “dire” or “poor.”

  Progressive: Medicalese for “it gets worse with time.” Usually used at early stages of an incurable illness.

  Proxy: Your medical advocate or health care agent, also known as your “surrogate,” POA, or “medical power of attorney.” This is the person you appoint to speak for you if you can’t make medical decisions on your own. He or she should know your values and is legally charged with carrying out your previously expressed wishes. If your wishes are unknown, your proxy is required to decide in light of what he or she considers your best interests. If you have no proxy, doctors will usually recognize a close family member, or decide on the basis of whatever they consider your best interests. People without a proxy are more likely to be given treatments to sustain life rather than to allow a natural death.

  Quality of life: Medical shorthand for “a life worth living,” a highly individual matter. An acceptable quality of life to one person may be unacceptable to another. In medicine, quality of life traditionally includes health, well-being, life satisfaction, freedom from pain and suffering, and the ability to pursue enjoyed activities and to create meaning and connect with others. Any proposed treatment should be weighed in light of its effect on your quality of life—as you define it. If you or someone you love is receiving treatment that is increasing suffering with little hope of benefit, tell the medical team “I am concerned about quality of life.”

  Response rate: The percentage of people who have a positive result from a treatment. If you are told that a treatment has a good “response rate,” ask what proportion of those treated have benefited, and whether that benefit translates into “clinical effectiveness” (direct improvement in your well-being or length of life) rather than “surrogate effectiveness” (shrinkage of your tumor or improvement on another test).

  Risk management: A hospital legal division devoted to avoiding lawsuits. To get a hospital administration’s attention, ask to speak with this department.

  Screenings: The search for health problems in the absence of symptoms. Often leads to overdiagnosis and overtreatment. A full list of screenings not recommended is on the “Choosing Wisely” website of the American Board of Internal Medicine. (A diagnostic test, in contrast, is performed to find out the cause of a symptom and is more likely to be medically and practically useful.)

  Sepsis: A catastrophic, whole-body, life-threatening, inflammatory response to infection. A common cause of ICU death.

  Shared, collaborative, and informed medical decision-making: An attempt to shift the balance of power between patients and doctors by giving patients more information and agency, encouraging them to make their medical decisions in light of their preferences, values, and expectations. Assumes that there is no one right answer, and that several equally valid choices can be made, depending on the patient’s priorities, needs, and risk tolerance. At its best, informed decision-making is a collaborative process, with doctors making clear recommendations based on their specialized knowledge and their understanding of the individual patient. At its worst, it devolves into a cafeteria-style conversation, with doctors simply offering a menu, as though surgery were the equivalent of selling a new car to an informed consumer. Also called medical decision-coaching.

  Slow Medicine: A medical philosophy, movement, and practice that advocates giving doctors the time to make a careful diagno
sis, to consider the needs and vulnerabilities of the whole patient, and to form a healing relationship. A reaction against “fast medicine,” the hasty overprescribing of tests and treatments. One of its slogans is “To do more is not necessarily to do better.” Started in Italy, it is now an international movement for medical reform.

  SNF: A “sniff” is a skilled nursing facility, or Medicare-approved nursing home.

  Stage four cancer: Cancer that has spread, or metastasized. It is almost never curable, though it sometimes can be slowed or managed.

  Surrogate: See Proxy.

  Surrogate effectiveness: Improvement in scores on a diagnostic test, under the assumption that these “surrogate markers” will translate into improved health, function, or length of life. They often don’t.

  Syncope: Fainting.

  Terminal: Fatal and incurable. Your doctor would not be surprised if you died within six months.

  Terminal, Total or Palliative sedation: keeping a dying patient unconscious until death comes, to soothe intractable agitation or pain. A sedative is administered via infusion or a specialized catheter.

  Vertigo: Dizziness.

  VSED (voluntary stopping of eating and drinking): Refusing food and water, or fasting, until death. It is legally permitted, in every state, but only for people who still have mental capacity.

  “We have more arrows in our quiver”: A phrase used by doctors meaning that the first or second treatments have stopped working, but he or she is willing to keep trying new drugs. Often used about stage four cancer and other diseases that can be slowed but not stopped. A good time to ask for a consultation with a palliative care doctor.

  “Withdrawing care”: An insensitive phrase used by doctors to mean releasing the patient from a painful, death-prolonging technology, such as a ventilator. In reality, doctors continue to care for such patients, but shift goals to “comfort care.”

  Worsening: A plain word many doctors avoid, preferring the more obfuscating progressive.