Introduction

The word "hospice" is derived from the Latin word "hospitium" meaning guesthouse. It was originally used to describe a place of shelter for weary and sick travelers going to religious pilgrimages where they found physical and emotional rejuvenation of their souls. During the 1960s, Dr. Cicely Saunders, a nurse who was retrained as a physician, began the modern hospice program when she opened St. Christopher's Hospice in South London. By 1998, over 540,000 people chose hospice care in United States, more than four times as many as in 1985.

The World Health Organization defines palliative care as "The active total care of patients whose disease is not responsive to curative treatment." Hospice care neither prolongs life nor hastens death but provides care to improve the quality of patients'last days of life by offering comfort and dignity. The primary goal of hospice is to treat the patient as a whole person, not just the disease, and relieve the suffering of the individual. It differs from the curative model of modern medicine practice where death is taken as an ultimate failure.

Hospice embraces death as a success if it occurs after the patient's suffering is relieved. The process of dying should not be viewed as a helplessness of medicine but rather as a continuum of medicine that would help the dying person to die peacefully and with dignity.

Hospice also deals with the emotional, social and spiritual impact of the disease on the patient, the patient's family and friends through a team approach that includes a physician, nurse, home health aides, social worker, chaplain and volunteers. Hospice care does not end with the death of the patient. It offers a variety of bereavement and counseling services to the families after the patient's death. Hospice programs provide palliative care 24 hours a day, 7 days a week to its patients. Usually 80 percent of hospice care is provided in home and nursing homes.

Communication

Communication with the patient in a language they understand is one of the very important aspects of hospice and palliative care. Many physicians find it difficult and awkward to break bad news to their patients, often because they mistakenly view terminal illness as their failure, which is not true. At some point along the continuum of disease, physicians will need to be able to ask their patients the "tough questions". For example, if a patient asks the physician "how long do you think I have, doctor?" A potentially uncomfortable but necessary response is a question that will help the patient think about the time ahead, "How long do you want to live?" "How long do you think you will live?" Towards the end of life, another appropriate but difficult question that may need to be asked is, "Are you ready to die?"

The three-stage model of the process of dying, as proposed by Robert Buckman, is very helpful. In the initial stage of "facing the threat," patients have one or more of these emotions that include anxiety, shock, disbelief, anger, denial, guilt, humor, hope/despair or bargaining. In the chronic stage of "being ill," most of the above emotions are either resolved or decrease in severity. Depression is quite common during this stage. The final stage is one of "acceptance" when patients are not as anxious and distressed as before. For further information on practical implementation of this model, please refer to Robert Buckman's "How to Break Bad News": A Guide for Health Care Professionals.

Good listening skills are a key element of palliative care. Sixty seconds of uncomfortable silence may seem like an unbearable eternity for the busy physician but a long pause could save the patient, as well as the physician, hours of frustrating discussions later about what the patient wants or needs.

Pain

One of the biggest fears of the patient with a terminal illness and their families is the thought of dying with pain. This is understandable since many patients suffer significant pain during the last phases of life. Unfortunately, many patients have "comfort measures only" (CMO) orders. False beliefs of addiction to strong analgesics, on the part of physicians as well as patients, contribute to this problem. Adequate pain control is now possible in most patients if the principles of pain management are applied correctly.

Effective pain management begins with the evaluation of "Total Pain" a term used to describe 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 by the astute physician.
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 manifesting itself as pain which is not relieved by even strong opioid analgesics.

There can be multiple sources of physical pain, some unrelated to the disease (e.g., arthritis, migraine headache, muscular strain). More often, pain is directly caused by the disease or cancer. Different types of pain need different and specific treatments. The World Health Organization developed a three-step process for the management of pain widely known as WHO 3 -- Step Ladder.

Step 1: Acetaminophen, aspirin and other nonsteroidal anti-inflammatory drugs (NSAIDs) are the non-opioid analgesics used for mild pain in the first step of WHO ladder. These analgesics have a ceiling effect. Acetaminophen is safe and a useful analgesic. Doses up to 4 g/day are safe for chronic use.

Step 2 and Step 3: If the pain persists or is of moderate to severe intensity, weak opioids followed by strong opioids (e.g., oxycodone, morphine, hydromorphone) are recommended. Opioids are the safest and most effective agents for the control of severe cancer-related pain. There are several misconceptions about opioids, particularly morphine, which may lead to the under-use of this very useful class of medicines by physicians.

Some of these are:

1. The most serious fear of physicians about using morphine is respiratory depression. However, if morphine is judiciously used it can be safely given even to patients with the history of chronic obstructive pulmonary disease. Respiratory depression should be suspected in patients when the level of consciousness and respiratory rate (RR) decline simultaneously, particularly if the RR falls below 10/minute.
2. Patients and physicians often have fears about addiction. Physical dependence is expected after chronic use of opioids and should not be confused with psychological dependence or addiction. If a cancer patient on stable doses of morphine needs more, this is probably because of disease progression or tolerance to the opioid, rather than addiction.
3. Morphine can cause nausea in many patients; this can be adequately managed by reducing the dose and giving an anti-emetic first. Similarly, sedation observed in the beginning of therapy can be managed simply by lowering the dose.
4. Patients and families may fear that the use of opioids means imminent death and by refusing opioids they can prolong life. Physicians should dissipate these concerns and should not reserve the opioids for the very end of a patient's life.
5. There is no ceiling effect to the analgesic action of morphine. It is effective with a wide dose range. Some patients may need a few milligrams of opioids every four hours while others may need a few hundred milligrams every four hours.

The following agents usually are not recommended:

Meperidine: It is poorly absorbed orally, has low potency and causes toxic metabolite accumulation, which can cause seizures.
Pentazocine: A mixed opioid agonist-antagonist with high incidence of psycho-mimetic effects, i.e., hallucinations.
Methadone: Long half-life (48-72 hrs) and short duration of analgesia makes dose titration and use in elderly difficult.

It may be necessary to switch oral opioids to other routes of delivery (sublingual, rectal, transdermal) if a patient is no longer able to swallow or is not adequately relieved after sufficient doses of oral morphine; if a patient is not taking them; or because of poor oral absorption as in delayed gastric emptying. Intravenous administration is usually avoided since it is uncomfortable and carries the risk of infection, but it can be used short term if IV access is already in place. Intramuscular administration is avoided because it is painful, uncomfortable and unnecessary since subcutaneous is equally efficacious, while the epidural/intrathecal route is rarely used in patients. In terms of onset and duration of effects of morphine, inhalation is as effective as IV, though bioavailability is only 59%.

Dyspnea

Dyspnea (literally, difficulty in breathing) is a subjective uncomfortable awareness of breathing that has a physical, emotional, social and spiritual component, just like pain. It is essential to treat the underlying causes of dyspnea. Some of the specific interventions include: bronchodilators and/or steroids; diuretics for fluid overload; antibiotics or no antibiotics (if patient or family wishes) for pneumonia; thoracocentesis and or pleurodesis for pleural effusion; trial of steroids for suspected lymphangetic pulmonary spread of cancer; blood transfusion for severe anemia; saline nebulization for thick respiratory secretions or oxybutinin (5 mg PO tid), hyoscyamine (0.125 mg PO/SL q8H), or transdermal scopolamine (1-3 patches q3 day) if the cough reflex is weak; paracentesis for gross tense ascites. Most patients with dyspnea experience anxiety that, in turn, worsens dyspnea. Simple measures such as upright posture, use of fans, open windows, relaxation techniques, and slow music, all help a great deal in relieving the anxious patient. Pain control is equally important as it can cause anxiety and may limit chest expansion that may further exacerbate dyspnea.

If no reversible cause for dyspnea is found, opioid analgesics are the drugs of choice for treating dyspnea. They are effective and safe even in patients with chronic obstructive pulmonary disease (COPD). Dyspnea is treated with opioids with the same principles as used for treating pain. Use of oxygen is often unnecessary. If oxygen is used to relieve dyspnea, nasal prongs should be employed instead of nasal masks, since masks may be terrifying and give a suffocating feeling. The need for the continuous use should be assessed periodically by observing respiratory effort, rather than checking pulse oximetry.

A "death rattle" is frequently heard in moribund patients who are too weak to cough up secretions that can cause dyspnea and can be very distressing to the family and friends. Anticholinergic drugs such as oxybutinin or scopolamine may be very helpful in decreasing the secretions. Suctioning should only be done if it seems likely to be effective.

Anorexia and Cachexia

Anorexia (loss of appetite) and cachexia (severe muscle wasting and weight loss) are common features experienced by most terminally ill patients and are a part of the dying process. Both cause significant distress to patients and, even more so, to the family and friends. Before embarking on use of pharmacological agents to improve appetite, physicians should identify and treat the reversible causes of anorexia. Treating pain, nausea, oral candidiasis, gastroesophageal reflux disease (GERD), gastritis, depression and constipation may improve the appetite significantly. Dry mouth secondary to drugs (anticholinergics) and radiation can be managed by changing the medications and use of pilocarpine 5-10 mg PO tid and/or artificial tears respectively.

Nonspecific measures such as educating the patient and family, asking the patient's food preferences, offering small, frequent, easy to swallow foods and eliminating dietary restrictions may be very helpful. Patients and families should be made aware that hunger pains are extremely rare in dying patients, especially in patients with cancer.

The appetite stimulating properties of alcohol can be used (in small amounts) if the patient enjoyed alcohol previously. Total parental nutrition (TPN) and tube feeding do not prolong life, and may increase the incidence of infection and other complications.

Nausea and Vomiting

Nausea and vomiting are common in terminal illness. In this situation, oral drugs are not tolerated and the caregiver needs to use alternate routes of administration. For mild nausea, antihistaminics (promethazine, meclizine, hydroxyzine) and anticholinegics (scopolamine patch, hyoscyamine SC) may be tried, which act mainly through the vestibular apparatus. More severe nausea may require neuroleptics (prochlorperazine PO/Suppository, haloperidol PO/SC, chlorpromazine suppositories) that act predominantly in the chemoreceptor trigger zone (CTZ). Prokinetics (metoclopramide PO, SC) promote gastric and small bowel activity via a cholinergic mechanism and also inhibit the CTZ. Dexamethasone is helpful for vomiting caused by increased intracranial pressure and tumor infiltration in the central nervous system and meninges.

Benzodiazepines (lorazepam, midazolam) probably act on the cerebral cortex and relieve nausea associated with anxiety and unpleasant memories. 5-HT3 antagonists (ondansetron, granisetron) block 5-HT3 receptors on vagal efferents in the bowels and also have a central action on the CTZ and vomiting center. This can effectively treat nausea and vomiting in most patients, but at an increased cost.

Intestinal obstruction causes nausea and vomiting along with abdominal distention and pain. Treatment of intestinal obstruction is often very different in patients with terminal cancer from those without it. Use of nasogastric tubes and surgery is often deferred. The aims of treatment are to relieve nausea, vomiting and eliminate pain. Nausea and vomiting can be controlled with haloperidol (5-15 mg/day SC, IV), metoclopramide (60-240 mg/day SC, IV), hydroxyzine (100-200mg/day SC, IV) or chlorpromazine (25-100 mg tid PR/IV). Metoclopramide can cause colic and should be combined with opioids. Methotrimeprazine (50-300 mg/day SC, IV) is very effective for nausea and vomiting along with its analgesic and sedating effects. A somatostatin, octreotide, has antisecretory and proabsorptive properties and can be used effectively to reduce distention, colic, and nausea and vomiting. The usual dose is 100-200 mcg q8H by SC injection. Morphine is used for pain and anticholinergics (glycopyrolate 0.4-1 mg/day SC or hyoscyamine 0.125 mg SCq6H) may be added for colicky pain.

Delirium

Delirium is a symptom complex that develops commonly in the final days of life. It is characterized by abrupt change of consciousness that tends to fluctuate over the course of the day. Effective management begins with the identification of underlying causes and not all symptoms necessarily need treatment. Common causes can be remembered using mnemonic DELIRIUMS:

Drugs (e.g., digoxin, theophylline, psychotropic medications)
Emotional (e.g., agitated depression, mania)
Low O2 states (e.g., myocardial infarction, pulmonary embolism, COPD exacerbation)
Infection (e.g., UTI, pneumonia)
Retention of urine or stools Ictal (e.g., seizures)
Under nutrition or under hydration
Metabolic (e.g., liver failure, renal failure, electrolyte imbalance)
Subdural hematoma

Once the potential reversible causes are identified, the decision to intervene can be made. Dying patients may have hallucinations and confusion that may not be causing trouble to the patient and family, e.g., patient may have visions of deceased family members and/or God in the last few hours of life and this may not require any treatment. On the other hand, overlooking something as reversible as urinary retention or fecal impaction is not acceptable either.

Non-specific measures -- providing a quite room, avoiding interruptions of sleep and following fixed daily schedules -- may be helpful. Use of restraints is clearly inappropriate and unethical.

Uncommon Symptoms

Management of most of the above mentioned apply equally in a home care or in a hospital/nursing home setting. However, most patients prefer to die at home, which may challenge the physician to deal with some of the distressing symptoms at home.

Some of these are:

1. Fecal Incontinence: causes the patient to lose his or her independence and is very embarrassing and distressful for the patient and the family. Focused evaluation of diet, drugs and toileting schedule with careful physical examination reveals the treatable causes. A common cause of fecal incontinence (usually small, frequent amounts) is fecal impaction. Nonspecific measures such as stimulating defecation at regular intervals by the use of suppositories or enemas, particularly for patients incontinent of solid stools, is very effective. Meticulous skin care and deodorizing techniques can significantly alleviate the patient discomfort.
2. Hemorrhage: This can be alarming and frightening to the patient and the family. Minor bleeding can be controlled with pressure dressings, adrenaline soaks, gel foam or fibrin powder.
3. Malodorous lesions: Odor from wounds can be very offensive, nauseating and embarrassing. A well-ventilated room, commercial deodorizers and deodorizing machines can significantly reduce the sickening smells. Specific charcoal dressings, topical metronidazole, silver sulfadiazine can be used to control topical anaerobic bacteria responsible for malodor. Systemic metronidazole can be effective also.
4. Convulsions: Like the sight of blood, convulsions are very frightening, but can be managed at home by family members if taught to give rectal diazepam, subcutaneous midazolam, phenobarbital or phenytoin and rectal enemas of valproic acid.

Euthanasia

Active euthanasia has no role in the current practice of hospice and palliative care. However, withdrawal or withholding of futile, unwanted and burdensome life sustaining treatment, after discussing with the patient and family, allowing nature to take its own course may be appropriate. Aggressive palliative care, a term endorsed by the American Geriatrics Society, may involve the use of high doses of opioids/sedatives, intended to relieve the suffering of the dying patient, though it may cause earlier death.