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Hospice and Palliative Care

Course Authors

Manoj Mittal, M.D., and Joseph H. Flaherty, M.D.

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.

Drs. Mittal and Flaherty report no commercial conflicts of interest.

This activity is made possible by an unrestricted educational grant from the Novartis Foundation for Gerontology.

Estimated course time: 1 hour(s).

Albert Einstein College of Medicine – Montefiore Medical Center designates this enduring material activity for a maximum of 1.0 AMA PRA Category 1 Credit(s)™. Physicians should claim only the credit commensurate with the extent of their participation in the activity.

In support of improving patient care, this activity has been planned and implemented by Albert Einstein College of Medicine-Montefiore Medical Center and InterMDnet. Albert Einstein College of Medicine – Montefiore Medical Center is jointly accredited by the Accreditation Council for Continuing Medical Education (ACCME), the Accreditation Council for Pharmacy Education (ACPE), and the American Nurses Credentialing Center (ANCC), to provide continuing education for the healthcare team.

 
Learning Objectives

Upon completion of this Cyberounds®, you should be able to:

  • Discuss the definition and standards of hospice and palliative care

  • Develop effective communication skills

  • Assess and manage pain

  • Assess and manage common non-pain symptoms

  • Discuss the basics of complex ethical decision-making process.

 

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.

-- National Hospice Organization(1)

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 later became a physician, began the modern hospice program. She opened St. Christopher's Hospice, the first hospice, in South London. St. Christopher's Hospice was based on a team approach to the care of people at the end of life, especially those suffering from terminal cancer and was the first program to use the new pain management strategies to provide comfort and compassionate care for the dying.(2)

The first hospice in the United States was opened in New Haven, Connecticut in 1974. Today there are more than 3100 hospice programs in United States. In 1998, over 540,000 people chose hospice care in United States. This is more than four times as many as in 1985.

Hospice refers to a unique concept of comfort care that provides physical, emotional and spiritual support for people with a terminal illness and their families. 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.(3) The moment of death often is beautiful but the process of dying can be hard work -- "like a woman giving birth."(4) The process of parturition can be very painful but the moment of birth of a baby is truly a beautiful moment. People who are dying similarly require practical assistance and caring presence during the painful process. 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.

One of the barriers to the effective end-of-life care is the widespread misconception among physicians that they have nothing further to offer dying patients.(5) They may not have any further curative treatment to offer but they can definitively provide comfort care so that patients can fully live the last days of their lives.

Hospice not only addresses the symptom management of a disease but 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. A typical hospice team 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. This stems from the fact that terminal illness is often viewed as a failure of physicians, which is not true. Part of this anxiety and awkwardness results from the physician's fear of being blamed for breaking bad news and a feeling of not being professionally trained in communicating bad news to the dying. This could be avoided by viewing death as a part of life and being exposed to these situations while in training. 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?"(6)

It is important to understand the "stages of dying" to better communicate and respond to patients' emotions. One of the widely accepted models of the stages of dying is the five-stage model as proposed by Kubler-Ross. This model divides the process of dying into five consecutive stages -- denial, anger, bargaining, depression and acceptance. Many patients express these emotions as an attempt to cope with the thought of their impending death. However, these emotions are neither experienced universally by every patient nor exhibited serially as mentioned in the Kubler-Ross model. There are several other emotional responses such as fear of dying, guilt, humor and experiences of hope and despair. These shortcomings led to the use of a three-stage model of the process of dying as proposed by Robert Buckman.(7)

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.

Understanding the process of dying helps the health care professional with the daunting and challenging task of communicating bad news to a patient that is both a skill and an art. The 6-step protocol, as suggested by Robert Buckman in "How to Break Bad News": A Guide for Health Care Professionals,(7) is very helpful in making the communication by the physician more effective.

Step I. Getting Started: Physician should know all the medical facts about the patient prior to starting communication. Better preparation helps avoid embarrassment later. The environment should be appropriate for discussion with the patient and members of the family without any distractions from telephone calls or pagers.

Step II. What does the patient and family know or suspect about the patient's condition?

Step III. Find out how much the patient wants to know. Most people in the United States want to know if they have a life-threatening illness but it differs significantly among patients of different race, religion and culture. Physicians often come across family members who request not to tell the patient about the diagnosis. Unless the patient has previously mentioned that he or she does not want information, it is both unethical and illegal to hide the important information from the patient. Rather than declining family requests right away, physicians should ask them why they don't want to tell the patient. The physician may transfer the patient care to another physician if the physician and family cannot agree about the disclosure of this information.

Step IV. Sharing the information: When sharing, always give the information in small amounts -- simply, sensitively and straightforward -- with frequent pauses in between. This will make the patient understand better and will give them the opportunity to respond and ask questions.

Step V. Responding to the feeling: The empathetic rather than sympathetic response to the patient's emotions is a useful technique since some patients may have strong emotional outbursts, which may make the physician feel awkward. In making the empathetic response, the physician does not necessarily have to feel the emotions himself.(8)

Step VI. Planning and follow up: Anticipate the steps ahead that may include discussing plans for helping to find additional sources of support.

Good listening skills are always needed for good communication skills. It is often noticed that physicians talk too much, particularly when nervous and distressed. Sixty seconds of uncomfortable silence may seem like an unbearable eternity for the busy physician. However, this long pause could save the patient, as well as the physician, hours of frustrating discussions later, centered around 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 a legitimate fear since many patients suffer significant pain during the last phases of life. 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 occurrence of pain between those with and those without CMO orders.(9) Some of the factors contributing to inadequate pain control are lack of experienced and knowledgeable physicians and false beliefs of addiction to strong analgesics on the part of physicians as well as patients. Adequate pain control is now possible in most patients if the principles of pain management are applied correctly.

The first step to management of any medical condition is the thorough assessment of the problem through meticulous history and physical examination with judicious use of laboratory investigations. This holds true for the management of pain also. An effective assessment 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.(10)

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,(11) manifesting as pain, which is not relieved by even strong opioid analgesics.

Other members of the interdisciplinary team, including the nurse (helping with assessment), social worker (helping with financial and social issues), chaplain (providing spiritual support) and nurse assistant (providing support of basic needs), can contribute significantly in alleviating the emotional, social and spiritual components of pain.

There could be multiple sources of physical pain. It could be unrelated to the disease (e.g., arthritis, migraine headache, muscular strain) or caused indirectly by the disease or therapy (e.g., oral thrush, constipation, surgery, injuries, bedsores). More often, pain is directly caused by the disease or cancer (e.g., bone and soft tissue pain, neuropathic pain, visceral or colic pain, raised intracranial pressure pain). Thus, different types of pain need different and specific treatments such as laxatives, antifungals, radiation therapy, etc.

The World Health Organization developed a three-step process for the management of pain widely known as WHO 3-Step Ladder. (See Figure 1). It is not always necessary to start at the lowest step when a patient with a terminal illness initially comes to the physician. If a patient has moderate to severe pain, it may be quite appropriate to start with a strong opioid (i.e., at step three).

Figure 1. The World Health Organization Pain Ladder.

Figure 1

"Adjuvant" refers to medicines that are not usually considered analgesics. Examples include corticosteroids for inflammatory bone and soft tissue pain, antidepressants/anticonvulsants for neuropathic pain, anticholinergics for visceral pain.

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. NSAIDs are particularly effective for bone and soft tissue pain which is partially responsive to opioids. NSAIDs have significant side effects such as gastropathy, ulcers, renal failure, bleeding, decrease in the number and function of platelets. Gastric protection can be provided by misoprostol. Cycloxygenase-2 inhibitors -- celecoxib and rofecoxib -- have lower incidence of gastrointestinal side effects compared to nonselective NSAIDs but have equal or more renal side effects. Nonacetylated salicylate like magnesium trisalicylate or salsalate can provide analgesia without affecting platelets in patients with quantitative or qualitative defects of platelets.

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(12) 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. 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.(13) 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 and can be adequately managed by reducing the dose and using an antiemetic initially. 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.(14)

Opioids reach peak plasma concentration approximately 90 minutes after oral/rectal administration, 30 minutes after subcutaneous (SC) or intramuscular injection (IM) and 6 minutes after intravenous administration. Opioids and their metabolites are primarily excreted by the kidneys and have a half-life of approximately 4 hours. Thus, effective steady state plasma concentration can be achieved after 4-5 half-lives within 24 hours. If pain is uncontrolled after 24 hours, morphine and similarly other opioids can be titrated upwards rapidly with doses increased by 50-100 %.

The easiest way to calculate the dose of opioids is to relate everything to 'oral morphine equivalents' as seen in Table 1.

Table 1. Equivalent Doses to Oral Morphine.

Oral Morphine Equivalents Alternative Opioid Equivalents
1-2 mg Codeine 30 mg & Acetaminophen 325 mg (Tylenol #3) (oral)
1-2 mg Hydrocodone 5 mg & Acetaminophen 500 mg (Vicodin) (oral)
5 mg Oxycodone 5 mg tablets or elixir (oral)
20 mg Morphine 7 mg SC/IV/IM
20 mg Hydromorphone (Dilaudid) 5 mg PO or 1 mg IV/SC

Figure 2. Conversion Example.

Figure 2

As seen in Figure 2, dividing the oral dose of morphine by 3 gives the approximate SC/IV/IM dose and dividing the oral dose of hydromorphone by 5 gives its SC/IV/IM dose. Similarly, oral dose of morphine can be converted to oral and SC/IV/IM dose of hydromorphone by dividing it by 4 and 20 respectively.

One simple example of opioid use is to start hydrocodone 5 mg every four hours (q4H) or codeine 30 mg q4H. If hydrocodone 10 mg q4H or codeine 60 mg q4H do not provide adequate pain relief, switch to oxycodone 5 mg q4h. If 2 oxycodone 5 mg tablets q4H are not providing relief, switch to 15 mg of immediate release oral morphine q4H. The bedtime short-acting dose should be doubled to provide uninterrupted sleep. Breakthrough pain should be managed with extra " rescue" or "booster" dose that should be 50-100% of the regular 4-hour dose and may be taken every 60-90 minutes orally, every 30 minutes SC/IM and every 10 minutes IV if needed.

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.

Alternate Routes of Drug Administration

It may be necessary to switch oral opioids to other routes of delivery 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, e.g., with delayed gastric emptying:

  1. Sublingual: Oxycodone and morphine are available as soluble tablets and concentrated solution (e.g., 20 mg/ml) that are well absorbed sublingually or in the buccal mucosa.
  2. Rectal: Usually uncomfortable for the patient. Dose for the rectal route is the same as that for oral route.
  3. Transdermal: Fentanyl patches are available, but are costly, have slower onset of action and propensity for coming off if patient perspires. Patient does require booster doses for breakthrough pain and have variability of analgesic levels.
  4. Fentanyl patch 25 mcg/hr = 7.5 mg +/- 3 mg of oral morphine equivalents.
  5. Subcutaneous: This route can be used for intermittent administration or continuous use by portable pumps, as used in-patient controlled analgesia (PCA pumps).(15)
  6. Intravenous: This route is usually avoided since it is uncomfortable and carries the risk of infection, but can be used for short term if IV access is already in place.
  7. Intramuscular: It is avoided since it is painful, uncomfortable and unnecessary since subcutaneous is equally efficacious.
  8. Epidural/Intrathecal: this route is rarely used in patients.
  9. Inhalation/Nebulization: It has been found that the onset and duration of effects of morphine are similar after IV administration or inhalation through aerosol delivery system,(16) however the bioavailability is only 59%.

Dyspnea

Dyspnea is a subjective uncomfortable awareness of breathing. This should be differentiated from tachypnea (rapid breathing) and hyperpnea (increased depth of breathing), which may or may not accompany dyspnea. Dyspnea has a physical, emotional, social and spiritual component, just like pain, and it should be managed with the interdisciplinary approach as used in the management of 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).(17) Dyspnea is treated with opioids with the same principles as used for treating pain. Weak opioids such as codeine and hydrocodone are used for mild dyspnea and strong opioids -- oxycodone, morphine and hydromorphone -- for moderate to severe dyspnea. If the patient on stable doses of opioids becomes less responsive with decreased and erratic breathing, he might be approaching death. Naloxone should not be used reflexively, as it may be extremely uncomfortable for patients with the return of pain and withdrawal symptoms. Only in cases of accidental overdoses should naloxone administration be considered (dilute 1 ampule 0.4 mg in 10 cc of normal saline and give 1 cc of diluted solution IV every 5 minutes until partial reversal occurs). In some patients, dyspnea can be effectively treated with short acting benzodiazepines (lorazepam or midazolam 0.25 mg IV/SC/PO), particularly in patients with a high level of anxiety.

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.

"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 the 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. In one study of 32 mentally aware competent patients with a terminal illness, monitored during 12 months of study, 63% never experienced any hunger and 34% had symptoms only initially once their food intake dropped to <25% of normal daily requirements. In all patients, symptoms of hunger, thirst and dry mouth could be alleviated, usually with small amounts of food, fluids, ice chips or lubrication to the lips.(18)

Pharmacological agents such as megestrol(19) 800 mg qd, dexamethasone 2-4 mg qd, dronabinol(20) 2.5-5 mg tid may improve appetite and feeling of well-being in some patients but these agents do not prolong life, are costly and not without side effects. The appetite stimulating properties of alcohol can be used (in small amounts) if the patient enjoyed alcohol previously. Total parental nutrition (TPN)(21) and tube feeding do not prolong life. In fact, these therapies may increase the incidence of infection and other complications, causing additional suffering(22) and, possibly, shortening the survival.

Nausea and Vomiting

Nausea and vomiting are common in terminal illness. The treatment can be effectively pursued if the pathophysiology and causes of nausea and vomiting are understood.(23) This is shown schematically below:

Figure 3

Oral drugs are not tolerated if a patient has nausea and vomiting. Alternate route of administration should be used if a patient has significant nausea and vomiting. 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 (CNS) and meninges. Benzodiazepines (lorazepam, midazolam) probably act on the cerebral cortex and relieve nausea associated with anxiety and unpleasant memories. 5-HT3 antagonists (ondansetron,(24) 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. If one antiemetic is only partially effective, it may be worth adding a second antiemetic with a different mechanism of action.

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 (reduced ability to focus, sustain or shift attention) and cognition that tends to fluctuate over the course of the day and the cause of which can be usually delineated by careful history, physical examination and laboratory findings.(25) Usually, effective management begins with the identification of underlying causes of delirium 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. If the interventions to treat the underlying causes of delirium are more burdensome to the patient than the symptoms of delirium, treatment of the symptoms only may be a reasonable option. 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 quiet room, avoiding interruptions of sleep and following fixed daily schedules -- may be helpful. Use of restraints is clearly inappropriate and unethical. Haloperidol 0.5mg- 2mg PO or SC may be effective. For a severely agitated delirious patient, benzodiazepines (lorazepam 0.5-2 mg/hr, midazolam 0.4 mg/hr) may be needed. However, caution should be used with both of these medications, as they may cause worsening of symptoms if used too often. When none of the above strategies work, the physician may have to consider using IV/SC infusion of phenobarbital or thiopental that may be titrated to unconsciousness. This has to be initiated with the informed consent to relieve the severe distress of the patient's family and friends.

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:(26),(27) This is one of the reasons for the frequent request for admission to hospital or a nursing home. It 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,(28) 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. Use of NSAIDs, coumadin or heparin should be avoided. Major bleeding is quickly fatal. Well-prepared and educated patients, families and physicians may prevent last minute crises, emergency department visits and death in an intensive care unit.
  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,(29) phenobarbital or phenytoin and rectal enemas of valproic acid.

Euthanasia

Active euthanasia has no role in the current practice of hospice and palliative care. Use of lethal injections to hasten the patient's death is a form of active euthanasia and is considered a criminal act of homicide. 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. This is known as the principle of double effect, as the physician's primary intent is to relieve suffering, rather than to cause the patient's death, even if the final result is identical.(30)

Summary

The role of hospice and palliative care is rapidly expanding with the technological advances and the better understanding of principles of medicine. Since we will all face death, this under-appreciated subspecialty of medicine has great potential to benefit many of us.


Footnotes

1Standards of a Hospice Program of Care. Arlington, VA: National Hospice Organization; 1993.
2Saunders CM. Hospices. In: Duncan AS, Dustan GR, Wellborn RB, Eds. Dictionary of Medical Ethics, 2nd Ed. London: 1981.
3Fox E. Predominance of curative model of medical care: a residual problem. JAMA 1997; 278(9): 761-763.
4Staddard S. The Hospice Movement: A better way of caring for the dying. New York: Stein and Day publishers; 1978.
5Twycross RG. Why palliative medicine? Henry Ford Hosp. Med. J. 1991; 39 (2) 77-80.
6Flaherty JH. Doing \"everything\" for the terminally ill older person. Aging Successfully (newsletter). 2000; Spring: 1-5.
7Oxford Textbook of Palliative Medicine. 1998; 2nd Ed.
8Buckman R. How to Break Bad News: A Guide for Health Care Professionals. Baltimore, MD: The John Hopkins Univ. Press; 1992:65-97.
9Goodlin SJ, et al. Death in the hospital. Arch Int Med 1998; 158:1570-2.
10Foley KM. Management of cancer pain. In DeVita VT, Hellman S, Rosenberg SA, Eds. Cancer: Principles and Practice of Oncology. 4th ed. 1993.
11Cassel EJ. The nature of suffering and goals of medicine. NEJM 1982; 306(11): 639-645.
12Twycross R. Misunderstandings about morphine. In: Pain Relief in Advanced Cancer. New York: Churchill Livingston; 1994:333-347.
13Light RW, Muro JR, Sato RI, Stansbury DW, Fischer CE, Brown SE. Effects of oral morphine on breathlessness and exercise tolerance in patients with COPD. Am Rev Respir Dis. 1989; 139:126-133.
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