Hospice and Palliative Care
Manoj Mittal, M.D., and Joseph H. Flaherty, M.D
Sit the terminally ill patient upright if they're having trouble breathing.
Dr. Mittal is a Fellow in Geriatric Medicine and Dr. Flaherty is Assistant Professor of Internal Medicine and Geriatrics, Saint Louis University School of Medicine.
-National Hospice Organization
The word hospice comes from from the Latin word hospitium, meaning guesthouse. In the Middle Ages, a hospice was a shelter for weary and sick travelers to religious pilgrimages, a place where they found physical, emotional, even spiritual rejuvenation. During the 1960s, Dr. Cicely Saunders, a nurse turned physician, founded St. Christopher's, the first modern hospice, in South London. St. Christopher's Hospice cared for people at the end of life, especially those suffering from terminal cancer. It used the most up-to-date pain management techniques to provide comfort and compassionate care for the dying.
The first hospice in the United States was opened in New Haven, Connecticut in 1974. Today there are more than 3,100 hospice programs across the country. In 1998, over 540,000 Americans chose hospice care, more than four times as many as in 1985. Sometimes, patients travel to a hospice facility; other times, hospice care is provided at home.
Hospice care neither prolongs life nor hastens death but attempts to improve the quality of a patient's last days of life by offering comfort and dignity in the form of palliative care — physical, emotional and spiritual support — for people with a terminal illness and their families. Unlike conventional medicine, where death is seen as the ultimate failure, hospice care embraces death as a natural part of life, even as a success if the patient's suffering is relieved. Advocates of hospice care compare dying to birth. The process of childbirth, of course, can be very painful but the final outcome is a truly wonderful moment. Like women in childbirth, people who are dying often require practical help and a caring presence during the painful process. Dying is not viewed as a medical failure, but rather as the ultimate opportunity for medicine to contribute to human peace, comfort and dignity.
The Hospice philosophy of care affirms support and care for people in the last phases of incurable disease so they may live as fully and as comfortably as possible. Hospice recognizes dying as part of the normal process of living and focuses on maintaining the quality of remaining life. Hospice affirms life and neither hastens nor postpones death. Hospice exists in the hope and belief that through appropriate care and promotion of community sensitivity to their needs, patients and families may be free to attain a degree of mental and spiritual preparation for death that is satisfactory to them.
A typical hospice team includes a physician, nurse, home health aides, social worker, chaplain and non-professional volunteers. Hospice care does not end with the death of the patient. It offers a variety of bereavement and counseling services to families after the patient's death. Hospice programs provide palliative care 24 hours a day, 7 days a week.
Promoting communication between doctor, patient and family is one of the most important aspects of hospice and palliative care. Many people have difficulty questioning doctors, especially about emotionally uncomfortable subjects such as death and dying; so, too, do many doctors find it difficult and awkward to break bad news to their patients.
Part of hospice care is training doctors to understand the "stages of dying" so that they may better communicate and respond to patients' feelings. One well known and widely accepted model is the five-stage model proposed by Kubler-Ross consisting of denial, anger, bargaining, depression and acceptance.
Robert Buckman has proposed a three-stage model which many find useful. According to Buckman, in the initial stage of "facing the threat," patients have feelings such as anxiety, shock, disbelief, anger, denial, guilt, humor, hope/despair or bargaining. In the second stage of "being ill," most of the above emotions are either resolved or decrease in severity. Depression is quite common during this stage. In the final stage, "acceptance," patients become less anxious and less distressed.
How to Talk to Your Doctor About Terminal Illness
A competent and caring physician should know all the medical facts about the patient prior to starting communication. This first conversation should take place in a comfortable and private setting. It should be large enough to include the patient and members of the family and it should be free of distractions from telephone calls or pagers.
The doctor needs to be told how much the patient wants to know. Often, family members ask doctors not to tell the patient about a diagnosis. Unless the patient has previously stated that he or she does not want this information, it is both unethical and illegal for the doctor to hide it. When all is said and done, this must be the patient's decision. Rather than simply declining this kind of request from the family, a doctor should talk it over, ask why they don't want to tell the patient and, hopefully, reach an understanding. If no meeting of the minds is possible, then it may be best to transfer care of the patient to another doctor with whom the family is more comfortable.
Throughout the process, it is important for the patient and the family to understand what is going on medically and to ask lots of questions. Doctors should be prepared to share as much information as possible with family and friends.
Finally, good listening skills are always important for everyone involved. Patience is required on both sides.
Many people fear dying with pain. This is a legitimate fear because many dying patients suffer significant pain. In one study of hospitalized patients, 46% of patients had pain in the last two days of life. More worrisome is the fact that half of these patients had "comfort measures only" (CMO) orders, and there was no difference in the amount of pain reported between those with and those without CMO orders. Clearly, many hospitals could and should be doing more to alleviate pain. Two main reasons for inadequate pain contol are a lack of understanding of pain on the part of physicians and an exaggerated idea of the danger of addiction to strong painkillers. Proper management of pain begins with an understanding of the acronym "PAIN," which is used to train doctors to remember the four different components of pain:
Physical problems, often multiple, must be specifically diagnosed and treated.
Anxiety, anger and depression are critical components of pain that must be addressed.
Interpersonal problems, including loneliness, financial setbacks, social and family tensions are often related to the patient's symptoms.
Non-acceptance of death or spiritual distress resulting from the desperate search for meaning and purpose of life can cause significant suffering.
Even physical pain is not always a simple matter. There could be multiple sources of physical pain. It could be unrelated to the disease (e.g., arthritis, migraine headache or muscular strain) or caused indirectly by the disease or therapy (e.g., constipation, surgery injuries, bedsores). More often, pain is directly caused by the disease or cancer.
The World Health Organization developed a three-step process for the management of pain:
Acetaminophen, aspirin and other so-called nonsteroidal anti-inflammatory drugs (NSAIDs) are the non-opioid analgesics used for mild pain in the first step of the WHO ladder. Acetaminophen is safe and effective and can be taken over a long period of time. NSAIDs are particularly effective for bone and soft tissue pain. NSAIDs do have side effects such as stomach problems, ulcers, kidney failure, bleeding, and blood problems. These should be discussed with your doctor.
If the pain persists or is of moderate to severe intensity, weak opioids followed by strong opioids (e.g., oxycodone, morphine, hydromorphone) are the usual next step. Opioids are the safest and most effective agents for severe pain caused by cancer. There are widespread misconceptions about these drugs,12 including an exagerrated fear that some of them, particularly morphine, will become addictive. Unfortunately, this has meant that they are not used often enough or in large enough doses by many doctors.
A common problem in people with terminal illnesses, dyspnea is uncomfortable or labored breathing. The cause of dyspnea is not always physical; it has a physical, emotional, social and spiritual component, just like pain, and it is treated with a similar approach.
The first step is to find and treat any underlying cause, such as bronchitis or pneumonia. In most patients, dyspnea creates anxiety that, in turn, worsens the dyspnea. Simple measures, such as encouraging the patient to sit upright, the use of fans, open windows, relaxation techniques and slow music, all help to relieve anxiety. Sometimes pain makes dyspnea worse by increasing anxiety and causing shallow breathing.
If no treatable physical cause for dyspnea is found, opioid painkillers, such as codeine, hydrocone and morphine, are the drugs of choice for treating dyspnea.
While usually not dangerous in itself, the "death rattle" that is frequently heard in dying patients who are too weak to cough can cause dyspnea and can be very distressing to the family and friends. It can be treated with drugs that clear the throat and windpipe or, less commonly, with suctioning.
Anorexia and Cachexia
Anorexia (loss of appetite) and cachexia (severe muscle wasting and weight loss) are experienced at some time by most terminally ill patients and are a part of the dying process. Both cause significant distress to patients, perhaps even more so to family and friends. While there are drugs that can stimulate appetite, doctors will first try to identify and treat any reversible causes of anorexia. Sometimes the underlying problem is pain, nausea, gastroesophageal reflux disease (GERD), gastritis, depression or constipation. These can be treated, after which many patients' appetites return.
Other treatments that may help include giving patients favorite foods, offering food in frequent small, easy to swallow meals, in place of the conventional three large meals, and eliminating dietary restrictions such as limits on salt so that the food is tastier. It is important for patients and their families to know that hunger pains are extremely rare in dying patients, especially cancer patients. In one study of the last 12 months of mentally aware patients with a terminal illness, 63% never experienced any hunger and 34% felt only mild hunger early on. Hunger, thirst and dry mouth are often treated with small amounts of food, fluids, ice chips or lubrication to the lips.
As for drugs, megestrol ,dexamethasone, dronabinol and others may improve appetite and improve the mood of some patients, but they do not prolong life, are quite costly and have significant side effects. In patients who drink, alcohol can be used in small amounts to stimulate appetite. Intravenous feeding (total parental nutrition) and tube feeding do not prolong life and carry the danger of infection and other complications that may increase the patient's suffering.
Nausea and Vomiting
Nausea and vomiting are common in terminal illness. They can be treated with drugs, including antihistamines, anticholinegics and, in severe cases, neuroleptics.
Delirium, or mental confusion, often occurs in the final days of life. Symptoms include a reduced ability to focus, sustain or shift attention.25 Common causes include drug side effects, depression, heart or breathing problems, infection, retention of urine or stools, seizures, underfeeding or dehydration and metabolic problems caused by liver or kidney failure. Sometimes, there is no identifiable cause.
If a treatable cause is identified, a decision must be made about whether to intervene. In some cases, the treatments for these underlying causes of delirium are more burdensome to the patient than the delirium itself. For example, dying patients may have hallucinations and confusion that may not be troublesome to the patient or family, e.g., patient may have religious visions or visions of deceased family members in the last few hours of life.
Difficult or Uncommon Symptoms
The following are symptoms of terminal illness, routinely dealt with by hospitals, that may present a greater challenge in a hospice or home setting:
This is one of the most frequent reasons for admission of the elderly to hospital or a nursing home. It causes the patient to lose his or her independence and is, of course, very embarrassing and stressful. Fortunately, it can often be successfully treated by focused evaluation of diet, drugs and toileting schedule. A common cause of fecal incontinence is fecal impaction, which is treated with suppositories or enemas.28 Meticulous skin care and deodorizing techniques can significantly alleviate discomfort.
This can be alarming and frightening. Minor bleeding can be controlled with pressure dressings, adrenaline soaks, gel foam or fibrin powder. Use of NSAIDs, coumadin or heparin should be avoided, as they interfere with the blood clotting mechanism. Major bleeding can be fatal; if this occurs, the patient must be brought to a hospital emergency room ASAP.
Odor from wounds can be offensive, nauseating and embarrassing. A well-ventilated room, commercial deodorizers and deodorizing machines can significantly reduce smells. In addition, charcoal dressings, metronidazole and silver sulfadiazine can be used to control the bacteria responsible.
Like the sight of blood, convulsions are very frightening, but can be managed at home by family members who can be taught to give the patient drugs such as diazepam, midazolam, phenobarbital, phenytoin and rectal enemas of valproic acid.
Active euthanasia, that is, killing a patient in order to end suffering, has no role in the current practice of hospice and palliative care. Use of lethal injections to hasten death is considered, under law, an act of homicide. However, allowing nature to take its own course by withdrawing or withholding futile, unwanted and burdensome life sustaining treatment, with the informed consent of the patient and family, may not violate the law and may be appropriate. A possible third option, called aggressive palliative care, involves the use of high doses of opioids and/or sedatives; while intended to relieve the suffering of the dying patient, this may, as an unintended consequence, cause or hasten death.