Instructor: Ann Allegre, MD
Module Developed by: Sharee A. Wiggins, NP, Post-MS(N), ARNP, BC-GNP, BC-ANP (2007)
Module Revised by: Sharee A. Wiggins, NP (2009;2008)
Reviewed by: Lynne Kallenbach, MD (2008); Daniel L. Swagerty, MD, MPH, CMD (2007)
Specific Learning Objectives:
A. Introduction
Before reviewing the learning objectives and content, please take the Pre-Test. You must do this before you can proceed with the module. Please review the Objectives, Content material, and Cases before our class session. We will apply the tasks in the Skills Objectives to these cases, and you should think about them ahead of time.
B. Attitudes - The medical student will recognize that:
- It is important to recognize one’s own feelings about death, and to develop a comfort level with it.
- Life can be enhanced even as it is coming to end.
- It is critical for physicians not to abandon patients who are terminal.
- Symptom management should be patient directed and individualized.
- Prophylactic pain management is appropriate.
- Addiction concerns are unfounded in pain symptom management.
- Referring a patient to hospice care does not connote failure on the part of a physician’s management of the patient, nor does it mean the physician has to lose control over the plan of care.
- All patients with life-limiting illness should receive palliative care whether or not the patient is formally enrolled in Hospice.
C. Knowledge - the student will be able to discuss:
D. Skills - The student will be able to:
E. Readings
Required Readings:
Swagerty, D., & Johnson, M.(2005). Primer for Hospice and Palliative Care Medicine. University of Kansas School of Medicine/Theo and Alfred M. Landon Center on Aging-prepared material.
Zichterman, A. (2007, May) “Opioid Pharmacology and Considerations in Pain Management.”US Pharmacist. Available online at: http://www.uspharmacist.com/continuing_education/ceviewtest/lessonid/105473/
Recommended Resources:
American Academy of Hospice and Palliative Medicine (AAHPM). EOL/Palliative Care Educational Resources. Available online at: http://www.aahpm.org/resources/
American Academy of Pain Medicine. Ethics Charter. (2003, adopted 2007). Available online at: http://www.painmed.org/pdf/1207ethicscharter.pdf
American Geriatrics Society (AGS) panel on persistent pain in older persons (2002). The management of persistent pain in older persons Journal of the American Geriatrics Society. 50:S205-S224.
Center to Advance Palliative Care. http://www.capc.org/
Emanuel, L., Ferris, F. D., Von Gunten, C.F., & Von Roenn, J. H. (2006). The Last Hours of Living: Practical Advice for Clinicians. Medscape, August 28, 2006. Available online at:: http://www.medscape.com/viewprogram/5808
[Note: this article includes excellent content and schema of the Two Roads to Death]
Goldstein, N. E., & Morrison, R. S. (2007). Palliative Care, 194-207/ In Ham, R. J., Sloane, P. D., Warshaw, G. A., Bernard, M. A., & Flaherty, E. Primary Care Geriatrics: A Case Based Approach (5th ed.). Mosby: St. Louis.
Kayser-Jones, J. S., Kris, A. E., Miaskowski, C. A., Lyons, W. L., & Paul, S.M. (2006). Hospice care in nursing homes: Does it contribute to higher quality pain management? Gerontologist;46:325-333
Medical College of Wisconsin. EPERC: End of Life/Palliative Education Resource Center. Fast Facts Index. [Fast Facts are peer reviewed, one-page outlines of key information on important end-of-life clinical topics for end-of-life educators and clinicians.] Available online at: http://www.eperc.mcw.edu/ff_index.htm
Nusbaum, N. J. (2007). End-of-life nursing home care: Resource allocation and ethics. Annals of Long-Term Care;15;5:23-26.
G. Cases
All of our patients die eventually. Helping to manage the dying process and making our patients' deaths as peaceful as possible, with symptoms minimized, and function and dignity maximized, is a proper goal of medicine. Providing excellent care to dying patients can be as rewarding as any other aspect of medicine.
- Terminally ill -- death is inevitable and is likely to occur within some defined period of time, usually 6 months.
- Hopelessly ill -- having no reasonable expectation of recovery from illness, although not necessarily terminally ill.
- Palliative care – sometimes called comfort care. However, palliative care is not necessarily mutually exclusive of curative treatments. The World Health Organization describe s it this way: "Palliative care...affirms life and regards dying as a normal process...neither hastens nor postpones death...provides relief from pain and distressing symptoms...integrates the psychological and spiritual aspects of care...offers a support system to help patients live as actively as possible until death...offers a support system to help the family cope with the patient's illness and in their own bereavement."
The Center to Advance Palliative Care (CAPC) notes in its manual that “ . . . palliative care programs generally address the physical, psychosocial, and spiritual needs and expectations of patients with life-threatening illnesses at any time during that life-threatening illness—even if life expectancies extend to years. Although the focus intensifies at the end of life, the core issues of relief of suffering and improvement of quality of life are salient throughout the course of the illness. . . .Palliative care programs, as they are now developing in the US, aim to serve patients throughout their illness experience, particularly, although not exclusively, in acute care hospitals and ambulatory outpatient settings.”
Any patient who has a life-limiting illness can receive palliative care. Older adults with advanced cancers, late-stage dementias, multiple strokes with dysphagia, chronic kidney disease (CKD), end-stage COPD, and end-stage heart failure, and neuromuscular degenerative disorders commonly receive palliative care or end-of-life (EOL) care. The focus of this type of care changes from cure to comfort: providing the best possible symptom management in order to maximize the patient’s dignity and bio-psycho-spiritual-social well-being. Patients who live in long-term care facilities do not have to be enrolled in a Hospice program to receive palliative care or end-of-life care.
- Hospice care – especially as it currently exists in the United States – refers to interdisciplinary palliative care that is provided under the auspices of a specific organizational structure and is limited to people with terminal illnesses (defined by Medicare as a life expectancy of no more than 6 months). Hospice has been called the "gold standard" of palliative care in the United States. The impact of Hospice on quality of life for the patient and support for the family is limited when referral is made late in the terminal phase of the patient’s dying.
The CAPC addresses the significant impact Medicare has on the delivery of hospice care in this country. “If a hospice program wishes to have its services paid for under the Medicare Hospice Benefit, the hospice program must meet federal regulations. Most hospice programs and their patients and families rely on this payment option. The United States Medicare Hospice Benefit limits care to patients who:
- agree to therapy with a palliative intent,
- have a life expectancy of less than 6 months if the disease runs its usual course in the judgment of the patient's attending physician and the hospice medical director, and
- elect the Medicare Hospice Benefit for coverage of all services related to their terminal illness.”
NOTE: refer to page 1 and pages 12-22 of the Primer for Hospice and Palliative Care Medicine by Swagerty and Johnson for hospice facts and for recognized guidelines for specific conditions.
Psychiatrist Jerome H. Jaffe, MD is credited with writing this now famous statement in a 1966 pharmacology textbook: “No patient should ever wish for death due to a physician’s reluctance to use adequate amounts of effective opioids.” Yet, a recent study that examined pain control for dying patients in skilled nursing facilities found significant undertreatment of pain in these patients whether or not a Hospice organization was formally involved with the patient (Kayser-Jones et al., 2006).
The management of terminally ill and hopelessly ill older adults requires the practitioner to have sensitivity to several features related to the care of the dying and communication with family, friends and nursing staff. The goal for the transition from living to death is comfort. Communication is the paramount skill that must be learned and practiced by the clinician. Clear communication with the patient and family regarding diagnosis, prognosis and medical care plans is essential. It is also critical to demonstrate your awareness that clear communication involves active listening, not just presenting information. (See also: Primer, pages 9-10)
Prognosis is sometimes difficult. However, in many cases it will be obvious. Being honest with the patients and family may mean saying, "I am not sure how much longer this process will go on.” Work with advanced dementia has indicated that one of the major determinants of length of life is the aggressiveness of the care; treatment of fever will prolong life, but often in a state that many consider worse than death. Artificial feeding has NOT been shown to prolong life in dementia patients. Feeding tubes are not recommended in end-stage dementias by either the American Medical Directors Association or the American Geriatrics Society.
Treatment plans should be discussed with the patient early in the palliative care process. Often, however, it is the family or responsible party who are called upon to make the explicit decisions about further diagnostic testing, feeding tubes, antibiotics, or even hospitalization and under what circumstances. All of those elements of the care plan should be discussed, ideally before a critical event. For terminally ill patients, these aggressive measures are usually not warranted. For the hopelessly ill patient with an unclear prognosis, these decisions may require more discussion and thought.
Food and Hydration. Most dying patients lose their appetites, but families may interpret this as “starving to death.” In the normal dying process food is not appealing or may cause nausea. Nutrients are not absorbed or utilized. Clenching of teeth may be only way some patients can express the desire not to eat. Food pushed upon unwilling patient may cause problems such as aspiration and increased tension. Most patients also stop drinking. Experts believe during last hours of living this does not cause distress. Use of parenteral fluids may have adverse effects such as fluid overload with consequent peripheral or pulmonary edema, worsened breathlessness, cough, increased orotracheobronchial secretions. This may be particularly true if there is significant hypoalbuminemia.
Symptoms associated with dying include pain – physical, emotional, spiritual, fear, anxiety, agitation, delirium and terminal restlessness, and dyspnea which may be severe. Alimentary tract symptoms may include oral problems, anorexia, nausea, vomiting, diarrhea, constipation and impaction. Other problems may include urinary incontinence, pressure ulcers, pruritus, dehydration and inanition. When death is imminent, most patients with terminal illness develop labored breathing and/or tachypnea caused by metabolic acidosis, dehydration or bronchopneumonia.
Since the goal of treatment is comfort, these symptoms should be managed actively to minimize stress on the patient, family caregivers and other formal caregivers. These can include more frequent monitoring of the patient, expertise in symptom management, and psychological and spiritual support for the patient, family, and caregivers.
Acetaminophen for fever, suppositories or enemas for impaction, oxygen and morphine for dyspnea, and condom or indwelling catheters for urinary retention or incontinence are common therapeutic interventions in the dying patient. Eyes may need artificial tears or gels. The perception of oral dryness may be managed with sips of liquids and ice chips if able to swallow, baking soda mouth rinses, or commercial saliva substitute. Avoid lemon swabs since they can be irritating, especially on cracked lips or open sores. Lip balms that are unscented may be comforting, or petroleum- or water-based lubricants.
ALL patients being treated with opioid therapy need to be placed on a prophylactic bowel regimen. The inclusion of a Senna agent is recommended with opioid use, though some patients will need multiple agents. Rational selection of stool softeners, laxatives, stimulants or cathartics will consider other contributing factors to the problem of constipation.
Nausea and vomiting side effects from opiods should be anticipated. These will often dissipate over time. Antiemetics must be made available. Sometimes, reducing the opioid dose and using other analgesic or adjuvant medications concurrently will result in nausea reduction or termination. Some individuals are quite opioid sensitive in the Chemoreceptor Trigger Zone (CTZ) in the brain, and are more difficult to manage.
Sedation, like nausea and vomiting, will typically decrease following a period of time on the new dose of opioid. If it does not and there is excessive sedation, consider that the opioid may have been titrated up too quickly. Titrate to effect. Sedation may also signal progression of the underlying pathology and the dying process.
A detailed pain history and focused exam are always indicated to help diagnose specific pain syndromes. Also, clues may be picked up in identifying factors that may suggest specific interventions or modalities that may ameliorate the pain. It is important to remember that not all pain has clearly defined pathology. Pain quality and pain intensity should be assessed, changes in either may suggest changes in underlying pathology, as well as yield information about the effectiveness of current pain management. A simple mnemonic for basic pain assessment is WILDA:
Word (patient’s description such as aching, burning, stabbing)
Intensity (0-10 verbal or visual analogue scales; faces scales)
Location (all sites)
Duration (constant; episodic; incident-induced)
Aggravating and alleviating factors (what makes it better or makes it worse).The impact of pain on mood, sleep, appetite, energy (fatigue level), and function should also be assessed. For older adults who are unable to report their pain due to non-verbal status or due to dementia, reliable and valid tools should be used by direct care providers, and the data used by prescribers to adjust pain management treatment accordingly. Commonly used tools can be found at the websites below:
- Common Intensity Screening Tools
http://www.partnersagainstpain.com/ (Click on “Pain Assessment” on left side-bar)- UCLA Faces Tools
http://www.anes.ucla.edu/pain/FacesScale.jpg- Assessing Pain in the Nonverbal or Cognitively Impaired
http://www.pain.com/sections/professional/drfiles/CNPI_Instrument.pdf- Persons with Advanced Dementia: Guiding Principles for the Assessment of Pain
http://www.medscape.com/viewarticle/533939_4
Controlling pain is an integral part of managing the end stage of life. If pain is present, do not rely only on PRN medication; analgesics should be scheduled. This is true not only due to the maxim that continuous pain requires continuous analgesia, but also because EOL patients -- with or without underlying dementias -- are often unable to express that they have pain. Patients who cannot swallow can be medicated subcutaneously, intravenously, or by suppository. Analgesia can also be delivered transdermally, but only on a schedule. Consider other pain intervention modalities, including services offered by anesthesiologists (blocks, pumps, etc.), physical therapists (PT, TENS units, etc.) and psychiatrists or other therapists (even hypnotherapy) as indicated by individual patient need and service availability.
Morphine sulfate is the opioid of choice for treating serious pain; it can be given orally as an immediate-release elixir (20 mg/ml), immediate-release tablet (15 mg), or sustained-release tablet (30 mg). Sustained release preparations are preferred for all persistent (chronic) pain. When a patient is on a sustained-release (long acting) opioid, they also need a short-acting opioid available as a PRN medication for breakthrough pain (BTP). The long-acting opioid then needs to be titrated up to prevent further breakthrough of pain. Expect that patients will require escalating dosages of pain meds over time as tolerance develops (tolerance is not the same as addiction). In long-term care (LTC) particularly, caution should be exercised about interpreting use of PRN medications. Lack of administration of available PRN medications does not necessarily mean the patient did not need them!
Hydromorphone is similar in effect and ease of administration and can be prepared in high concentrations (100 mg/ml) for high-dose parenteral use. Other opiates may be indicated in special circumstances. For example: methadone for the patient who needs a longer duration interval, or additional treatment of a neuropathic pain component. (When methadone is being considered, a specialty pain consult is recommended.). Frequent monitoring should be done to observe for BTP, excess sedation, urinary retention, constipation, and nausea. The table below outlines the most commonly used opioids and their typical doses.
Long-acting opioids such as Fentanyl transdermal, MS Contin, Oxycontin, and Hydromorphone are commonly used for palliative care pain management. (However, extended-release preparations are avoided for initial dose titration. Once continuous pain is controlled, the switch can be made to extended release preparations.) In addition to scheduled long-acting opioids, short-acting opioids must be available as PRN dosing for breakthrough pain (BTP).
Transdermal fentanyl is 100 times more potent than Morphine and is supplied as micrograms in 5 patch strengths: 12.5 mcg (labeled as Duragesic 12 ®), 25 mcg, 50 mcg, 75 mcg and 100 mcg. Caution should be used with delirious patients to place the patch in an unreachable place on the patient’s body; there has been at least one case report of a patient pulling off the patch, chewing it, and receiving a bolus of fentanyl. Additionally, the transdermal patches are designed for 72-hour durations; however, some patients may need the patches changed after 60 hours, and in more rare cases even 48 hours if fever is present. Febrile states accelerate release of the drug into the systemic circulation.
Immediate release morphine (or less often, oxycontin) is often used to acutely manage pain or dyspnea and associated anxiety or restlessness. These are available as elixirs and the concentration of 20 mg per 1 ml allows for sublingual administration to patients who cannot swallow. Morphine is particularly useful with acute dyspnea symptoms.
The student is encouraged to read the excellent web article by Anne Zichterman in US Pharmacist (release date May, 2007), “Opioid Pharmacology and Considerations in Pain Management.” It can be accessed online at: http://www.uspharmacist.com/continuing_education/ceviewtest/lessonid/105473/.
All of the opioids are reviewed, including the inappropriateness of propoxyphene and meperidine, and titration is discussed. Numerous tables include: 1) Sustained Release and Long-Action Opioids, 2) Equianalgesic Chart, 3) Morphine to Methadone conversion and, 4) Paitent case for Opioid Conversion.
The World Health Organization’s 1990 Analgesic Ladder provides a recognized approach to the management of pain. The ladder begins with an adequate assessment of the patient’s pain. Accurate assessment is critical for beginning pain treatment at the proper step. Note that a patient with Step 3 pain intensity should receive a strong opioid; it is inappropriate to begin pain treatment for such a patient at the lower steps. Analgesic medications are listed by class on the right side of the steps. All steps may or may not include adjuvant medications.
For steps two and three, the ladder includes the use of opioids and non-opioids – central agents and peripheral agents. The principle is the same as that for combination drugs such as Lortab® or Vicodin® which contain fixed amounts of both hydrocodone and acetaminophen. Other combination formulations include the non-opioid agent as ibuprofen and aspirin (older meds). The combination of opioid and non-opioid is synergistic and typically will provide for greater pain relief than use of an opioid alone. However, combination pills are dose-limiting by the non-opioid component. Single agent opioids have no dosage limit (no ceiling) and no legal limit. They are titrated to effect in palliative care.
Acute Pain Usually has predictable ending; resolves when tissue healing occurs, or when control of disease occurs. Typically involves somatic type. Can be neuropathic as with surgical trauma or herpes zoster. Addiction “ . . . a primary, chronic, neurobiologic disease, with genetic, psychological, and environmental factors influencing its development and manifestations. . . characterized by behaviors that include one or more of the following: impaired control over drug use, compulsive use, continued use despite harm, and a craving.” (Consensus document from AAPM, APS, and ASAM, 2001) Adjuvant Drug Medications developed for non-analgesic purposes, but which have properties that change pain perception in some way. Examples: AEDs (anti-epileptic drugs) gabapentin, pregabalin; SNRI antidepressant duloxetine for neuropathic pain, and TCAs (tricyclic antidepressants), amitriptylene and nortriptylene. Amitriptylene may have more pain symptom management efficacy, but its anticholinergice properties can limit use in older adults. Allodynia Induction of pain following a non-painful stimulus. Caused by the recruitment of nerve fibers not usually involved in the transmission of the pain signal. [neuroplasticity concept]
Breakthrough Pain (BTP) A transitory flare of pain of moderate to severe intensity occurring on background of otherwise controlled pain.
Central Pain Pain induced by an injury or abnormal function in the central nervous system such as causalgia and post-stroke pain (aka: Thalamic Pain Syndrome and many others). Chronic Pain Various definitions and time-frames, but commonly understood to be ongoing pain that lasts longer than 3 months following an injury or acute condition; or pain lasting longer than the expected time for tissue healing following an injury or acute condition. The etiology of the pain cannot removed. The pain syndrome is frequently multifactorial. Fluctuations in character and intensity. Older term used interchangeably with the newer preferred term “persistent pain.” The 2002 AGD Guideline states that chronic pain has become a label that carries negative connotations. CNCP “Chronic noncancer pain,” formerly known as chronic nonmalignant pain, or chronic benign intractable pain (CBIP). Protracted pain may lead to the development of pain in areas unrelated to the original area of involvement (concept of neuroplasticity).
Equianalgesia Literally “equal analgesia.” Equianalgesic charts are helpful when switching analgesics or considering the use of combination analgesics. (Click on links below.) Morphine is the comparison gold standard for opioids. Aspirin is the standard for nonopioids, as well as weak opioids.
http://www3.us.elsevierhealth.com/pain/pdf/Chart1a.pdf
http://www3.us.elsevierhealth.com/PAIN/pdf/Chart1b.pdfHyperalgesia Lowered pain threshold due to central nervous system sensitization. Hyperpathia Unusually painful and prolonged reaction to a stimulus. Narcotic Obsolete term for opioids. Technically, a legal term which applies to numerous substances which have the potential to be abused and not limited to opioids. Neuropathic Pain Pain due to dysfunction of signal processing in either the peripheral or central nervous system. Pain quality: classically, burning; paresthesias; lancinating (shooting). May be due to a primary lesion or due to altered disturbance of nerve signals (see: neuroplasticity) Nociceptive Pain Induced by physiologically normal processing of pain provoking stimuli. Pain quality: often aching or throbbing. Either acute or persistent pain. Two Subtypes: 1) Somatic – musculoskeletal & skin 2) Visceral – internal organs.
Neuroplasticity Conceptually, a “re-wiring” of nerve physiology involving new neuronal connections arising from pain transmitting neurons leading to both increased sensitivity and intensity. Recruitment of nerve fibers not normally involved in the pain sensation are often part of this process, as is activation of NMDA (N-methyl-D-aspartic acid) receptors. This plasticity is grounded in research and is the current theoretic basis for the development of chronic pain long after tissue injury healing after acute injury should have been complete. It is also the basis for aggressive management of acute pain as not only humane, but also as pre-emptive strategy regarding chronic pain syndromes. Nociceptive Pain Induced by physiologically normal processing of pain provoking stimuli. Pain quality is often an aching or throbbing quality. These pain processes can be active in acute and persistent pain. Nociceptive pain subtypes: somatic and visceral. Oligioanalgesia Undertreatment of pain Opioid Opium derivative or synthetic chemical which relieves pain by binding to opioid receptor sites – mu, kappa, and delta – in the central and/or peripheral nervous systems. Opioids are classified by their activity: full agonist, partial agonist, and mixed agonist-antagonist. Full agonist opioids that bind to the mu receptor sites are probably the most effective analgesics. Opioids do not have an analgesic ceiling, i.e., the greater the dose given, the greater the pain relief. Current treatment of persistent pain of moderate to severe intensity includes consideration of opioid therapy.
Classification examples: 1) Full agonist short-acting opioids (morphine, hydrocodone, oxycodone, hydromorphone, meperidine); 2) full agonist controlled release alternatives to short acting agents (such as MS Contin, Oxycontin; 3) full agonist transdermal alternative to short acting agents (fentanyl); 4) full agonist long acting agents (methadone, levorphonal); 5) partial agonist or mixed agonist-antagonist (buprenorphine, butorphanol, nalbuphine, pentazocine).
Opiophobia Reluctance to prescribe needed opioid medications for patients due to an irrational fear of addiction. Rooted in ignorance. Pain “. . . unpleasant sensory and emotional experience which we primarily associate with tissue damage or describe in terms of such damage, or both” (IASP).
Pain Intensity Severity of pain as reported by the patient. Usually associated with using a measurement tool such as a 0-10 verbal numeric rating scale,faces scale, or other visual analogue tool. There are no objectives tools or biomarkers to measure pain. Pain Quality Terms used by the patient to describe the pain. Hundreds of terms could be used. Descriptions often provide clues about the type(s) of pain. A few examples include: burning, sharp, deep, aching, knife-like, hot, shooting, searing, twisting, scoring, boring, like lightening. Anecdotal reports of unique examples (and all pain is unique to the person) include: “as mean as the devil” and “as hateful as rusty tin cans.” Peripheral Pain Associated only with the peripheral nervous system.
Persistent Pain: ". . . painful experience that continues for prolonged period of time that may or may not be associated with a recognizable disease process. . . . the term persistent pain [vs. chronic pain] may foster a more positive attitude by patients and professionals for the many effective treatments that are available to help alleviate suffering." (AGS Panel Guideline, 2002) Physical Dependence A condition resulting from neurophysiologic changes which occur in the presence of exogenous opioids. This is NOT the same as addiction; addicts have physical dependence, but persons using opioids for pain relief who develop physical dependence are NOT addicts. Physical dependence is manifested by a common cluster of signs and symptoms which occur when opioids are stopped abruptly, decreased too quickly, or following the administration of an antagonist drug. Common withdrawal symptoms are: tremors, diaphoresis, rigors, abdominal cramping, nausea, vomiting, diarrhea, coryza, lacrimation, myalgias and arthralgias. Pseudoaddiction Requests for more medication, or drug-seeking behavior that mimics addiction, but is not due to addiction. An example is the “clock watcher” who is focused on getting his/her medications. The behavior is rooted in the undertreatment of pain -- the person craves pain relief, not drugs. The verbal requests and/or atypical behaviors resolve when the pain is adequately treated. This is not true for addiction. Pseudotolerance The need to increase an analgesic due to some reason other than true tolerance; both progression of disease and deviant behavior are examples Psychological Dependence An emotional tie to a particular drug to the extent that any discussion or plans to stop the drug causes the person anxiety.
Somatic Pain Pain of musculoskeletal origin; quality often aching or throbbing. Tolerance A state of adaptation in which there is a need for increased drug amount to provide the same amount of pain relief (or other therapeutic effect) that a lower dose provided earlier. This is NOT synonymous with addiction, and does not always occur during opioid treatment. Visceral Pain Pain originating in internal organs.
(A hospice perspective adapted from Marty Johnson, RN)
Introduction
Critical issues during the final hours include management of: a) feeding and hydration, b) changes in consciousness, c) delirium, d) pain, e) shortness of air (SOA), breathlessness, and f) secretions. Care provided during last days and hours has profound effects on the patient, survivors, and caregivers. At the very end of life, there is no second chance to get it right.
For all deaths across the life span, less than 10% die suddenly and unexpectedly. These are from causes such as acute myocardial infarction (AMI), stroke, or motor vehicle crash. The remaining more than 90% die after steady decline. Those who succumb to cancers will typically have a shorter terminal phase. A slow decline punctuated with periodic crises is more characteristic of those who die from chronic conditions such as: chronic obstructive pulmonary disease (COPD), congestive heart failure (CHF), multiple sclerosis (MS), or amyotropic lateral sclerosis (ALS).
Preparing for the Last Hours of Life
Most patients require continuous care. Families should be able to be present 24-hours a day in private and intimate surroundings. Since changes can occur suddenly, all medications and supplies need to be available. Quick response can decrease likelihood of hospital admission.
Education. Preparation and education of family and caregivers are essential. This includes information about prognosis and potential time course, and signs and symptoms of the dying process as well as potential management. Families need to be helped to understand that our perception of the dying experience may be very different from what patient experiences. If they feel confident, the experience can be a time of final gift giving. If, on the other hand, they feel unprepared and unsupported, they may worry about how to handle the next event. If the things don’t go as they expected, they may live with frustration, worry, fear or guilt that they did something wrong or caused the patient’s death.
Two Roads to Death
(See Medscape web article in reference list by Emanuel et al., program #5808)Decreasing Level of Consciousness
- Most patients experience increased drowsiness, sleep most if not all of the time, and eventually become unarouseable.
- Absence of eyelash reflexes indicate a profound level of coma equivalent to full anesthesia
Communication with the unconscious patient
- Data from operating room and “near death experiences” suggest awareness in dying patients may be greater than their ability to respond
- It is prudent to presume the unconscious patient hears everything
- Advise families and caregivers to talk to patient as if he or she were conscious
- Since touch can heighten communication, encourage family members to show affection in ways they are used to
- Okay to lie beside patient and maintain intimacy they are comfortable with
Terminal delirium
- May be first sign to indicate “difficult road to death”
- Frequently presents as confusion, restlessness, and/or agitation, with or without day-night reversal
- If delirium is misdiagnosed or unmanaged, family will likely remember a horrible death; that their loved one was “in terrible pain,” or cognitively impaired “because of the drugs” they may worry that their own death will be the same
- It’s important to remember that what patient experiences may be very different from what onlookers see
- Moaning, groaning, and grimacing accompanying agitation and restlessness are frequently misinterpreted as physical pain
- Belief that uncontrollable pain suddenly develops at the time of death is a myth
- Trial of opioids may be beneficial, but also may accumulate and add to delirium when renal clearance is poor
- If opioid doesn’t work, try therapy to suppress symptoms of delirium
- Benzodiazepines
- Lorazepam 1-2 mg every hour to effective dose, then divided doses every 3-4 hours
- High doses of 20-50+ mg/24 hours may be needed
- If paradoxical excitement occurs, use neuroleptic such as haloperidol 0.5-2 mg every hour to therapeutic effect, then nightly or every 6 hours to maintain
Respiratory symptoms
Loss of ability to swallow
- Many fear the comatose patient will experience a sense of suffocation
- Patient may not be experiencing dyspnea and may not benefit from oxygen (which may actually prolong the dying process)
- Low doses of opioids (particularly morphine) or benzodiazepines are appropriate to manage any perception of dyspnea
- No evidence that increased use of opioids and anxiolytics or antipsychotics at the end of life precipitate death; evidence suggests the opposite.
- Gag reflex and reflexive clearing of the oropharynx decline; secretions from the tracheobronchial tree accumulate
- Accumulation of saliva and oropharyngeal secretions may lead to gurgling, crackling, or rattling sounds with each breath
- Also called the “death rattle”
- Term should be avoided, as it may be disconcerting to families and caregivers
- To treat excess secretions:
- Scopolamine patch (Transderm Scop ®)
- 1-3 patches every 72 hours
- Scopolamine does not work immediately. Evidence suggests that the earlier treatment is initiated, the better it works, especially to eliminate excess secretions in the upper aerodigestive tract
- Premature use in alert patient may lead to uncomfortable drying of oral and pharyngeal mucosa.
- Hyoscyamine elixir (Levsin ®) 0.125 mg/ml (for more rapid results)
- 1 ml SL every 4 hours
- Atropine 1% 1 drop SL can also be used
- If excessive secretions accumulate in the orpharynx or upper airways, it may be helpful to turn the patient onto one side
- Suctioning may not be helpful since secretions are often beyond the reach of the catheter
- Suctioning may stimulate an otherwise peaceful patient
Loss of sphincter control
- Caused by fatigue
- May lead to incontinence of urine and/or stool
- Can be distressing to patients and family members if they are not prepared in advance
Pain
- No evidence that pain increases at the time of death
- Indicators of pain might be grimacing and continuous facial tension, particularly across forehead and between eyebrows
- Maintain high index of suspicion for the symptom
- Do not misdiagnosis when fleeting forehead tension comes and goes with movement or mental activity (i.e., dreams or hallucinations)
- Do not confuse with restlessness, agitation, moaning and groaning that accompany terminal delirium
- If diagnosis is unclear, a trial of higher dose of opioid is appropriate
- Diminished hepatic function and renal perfusion (indicated by oliguria or anuria) may lead to increased serum concentrates, toxicity, and an increased risk of terminal delirium
- Consider use of alternative opioids such as fentanyl or hydromorphone
Loss of ability to close eyes
- Loss of retro-orbital fat pad prevents eyelid from closing
- Conjunctiva may be exposed even when patient is sleeping
- Use ophthalmic lubricant (every 3-4 hours) or artificial tears (every 15-30 minutes) to keep moist
Medications
- As death approaches, reassess the need for each medication
- Continue only meds to relieve pain, dyspnea, excess secretions and terminal delirium and to reduce risk of seizures
Dying in Institutions
- When death is imminent:
- Patients should remain with caregivers they know
- Environment should be as home-like as possible
- Private room will facilitate privacy for family
- Care plans should be amended with change in focus from curative to palliative care
When Death Occurs
- Signs that death has occurred:
- Cessation of heartbeat and breathing
- Pupils become fixed and dilated
- Eyes may remain open
- Body color becomes pale and waxen as blood settles
- Body temperature drops
- Muscles and sphincters relax
- Muscles stiffen 4-6 hours after death as rigor mortis sets in
- Urine and stool may be released
- The jaw may drop open
- Those in attendance may hear the trickling of internal fluids even after death
If patient dies expected death at home
- If Hospice is involved, have the family call the Hospice organization
- Usually a nurse will confirm the absence of vital signs
- If Hospice is not involved, call the coroner then the funeral home
- A healthcare professional (usually a nurse) should spend a few minutes positioning the patient’s body, removing catheters, and cleaning the patient as needed to allow the family closer access to a dignified body
- Focus of care should shift from the patient to the family and caregivers
- Give family permission to spend as much time as they wish with the body
- Helps deal with acute grief
- Encourage to touch, hold and even kiss their loved one
- Family members may find it therapeutic to help bathe and prepare the body for transport
- Final act of direct caring
- Moving the body is often a major confrontation with the reality of the death
- Some family members may wish to witness this transport while others will prefer to be elsewhere
Notifying Others of the Death
- Professional or lay clergy, spiritual advisors or other interdisciplinary team members can provide support to family members who are present
- It may be helpful for those not present at the time of death if the healthcare team members relate the events and process leading up to the death and afterward
- As visitors arrive, spend a few moments to prepare them for what they are likely to see
- Try to avoid breaking unexpected news by telephone
- In-person communication provides better opportunity for assessment and support
- You may choose to tell a person by telephone that patient’s condition has “changed” and wait for them to come to the bedside to tell them the news
Guidelines for Communicating Bad News
- There are times when notification of death by telephone is unavoidable
- Six steps of good communication:
- Get the setting right
- Determine the facts before you call
- Identify yourself and ask identity of person with whom you are talking
- Ask to speak to the person closest to the patient
- Do not give death notification to minor children
- Ask what the person understands
- “What have you been told about _____’s condition?”
- Provide a “warning shot”
- “I’m afraid I have some bad news.”
- Tell the news
- Use clear, direct language without medical jargon
- Avoid words like “expired” or “passed away”
- Easily misinterpreted
- Respond to emotions with empathy
- Listen quietly
- Allow time for information to sink in
- “What questions do you have?”
- Ascertain available support
- “Is there anyone I can contact for you?”
- Conclude with a plan
- If they choose to come see the body, arrange to meet them personally
- Give contact information for healthcare professional that can meet with them and/or make arrangements
- Discussion should include personal, cultural, and religious traditions, rites, and rituals, and how the body is to be handled and/or moved
Ruth
Ruth is a 93 year-old retired schoolteacher who has lived in a nursing facility the last eight months. Prior to her hip fracture two years ago, she lived alone in her home of 50 years. Although she was getting forgetful, her family noted that she was able to work in her garden and enjoyed going to church and spending time with friends and family. The hospitalization for the hip fracture was complicated by acute delirium and she moved to an assisted living facility at the time of discharge from skilled care. Over the next year, she had three hospitalizations for urinary tract infections and a myocardial infarction. She went to a long-term care facility for skilled care (Medicare A benefit) after her heart attack due to generalized weakness and debility. However, once discharged from Medicare A, she was unable to return home. At the time of nursing home admission, her diagnoses were coronary artery disease, hypertension, osteoporosis, renal insufficiency, and mild dementia. She was able to walk with a walker to the dining room after she recuperated from her heart attack.
She was admitted to the hospital six weeks ago for dehydration, her only hospitalization in the past eight months. Her swallowing study in the hospital was normal. In the past eight months, her weight has decreased from 137 pounds to 120 pounds. She has lost strength and requires assistance to get up from the bed. She uses a wheelchair most of the time. She is much less talkative but still greets family members and favorite staff members with a smile. She enjoys reminiscing about her past. She says that she hopes that she will die soon so that she can be with the Lord.
QUESTIONS:
1. What nutritional interventions are appropriate at this time?
2. What other treatments/interventions should be considered?Continuation of the case:
Ruth received a one-month trial of an SSRI antidepressant, which did not help her appetite. She does not choke on her food, but pushes her plate away after a few bites. Her weight loss continued, and she has lost another 8 pounds in the past month. She has a 1 cm Stage II pressure ulcer on her coccyx. She now requires maximal assistance of one person to transfer to the wheelchair. A care plan meeting was held with her family, including her son Albert who is her durable power of attorney for health care decisions. Albert and his wife state that they believe Ruth is failing rapidly and that she should not have to go through any tests or treatments unless they are for comfort. They point out that she has an advance directive, and state that she is at peace and should be left alone. They think that she may be waiting to hear from her estranged daughter, Mary Ann, who lives in the area but does not visit. They also express regrets for the treatment Ruth received from her husband of many years, who was an abusive alcoholic.
QUESTIONS:
3. Is it ethical to let Ruth decline without further attempts at reversing her decline?
4. What interventions are appropriate for a palliative approach?
5. Is Ruth dying? If so, what is her terminal diagnosis?
Mrs. Smith
Mrs. Smith is a 75-year-old white female with end-stage chronic obstructive pulmonary disease (COPD). She is steroid and oxygen dependent for her chronic lung disease. Most recently, she has been confined to her home with her mobility limited to transfers from her bed to a bedside commode. She has suffered several vertebral fractures in the past and often complains of pain, especially when out of bed. Based on your recommendation at her last clinic visit, she and her family have accepted home hospice. She previously lived alone, but her daughter has taken a leave of absence from work to care for her in her home. She continues on aerosolyzed Albuterol and Ipratropium four times a day, Triamcinolone Acetonide 4 puffs twice a day, Prednisone 20 mg. daily, Acetaminophen 650 mg four times a day, Oxycodone Sustained Release 20 mg every 12 hours, Oxycodone Immediate Release 5 – 10 mg q1 hr prn severe pain or dyspnea, Oxygen at 3 liters per nasal cannula, and Milk of Magnesia 30 cc once a day prn constipation.
Following 2 months of hospice care, you make a home visit to reassess Mrs. Smith. She has done better than expected and is now able to sit up in a chair for short periods of time. A recent history of weight loss has stabilized at 100 pounds (height is 66 inches). On examination, she appears to be in mild to moderate pain. She rates her pain level at 6 on a scale of 10 in her back when she is sitting up, and 2 /10 when she is lying down. She responds appropriately to questions. She is febrile with a pulse of 110 beats/minute, respiratory rate 32 breathes/minute, blood pressure 140/70 mm Hg, and Sp02 (pulse oximeter reading) 86% on 3 liters of oxygen. Her chest exam reveals distant breath sounds and a prolonged expiratory phase. Cardiac exam reveals a tachycardia and a 2/6 systolic murmur heard loudest at the apex. Her abdomen is distended and somewhat tender without rebound, rectal examination is significant for hard stool impaction, which is heme positive. She has 2 mm of pitting edema extending to her upper calf bilaterally.
During your visit, she states that she has increasingly focused on her wish to die. She has acknowledged her terminal prognosis with a life expectancy of a few months. She reports both weakness and lack of any hope or ability to make plans for the future. She tells you, “ I have always been a future oriented person, making plans and thinking of projects, and this just isn’t the quality of life for me.” Your assessment reveals no evidence of cognitive impairment and her decisional-capacity to be intact. She does not appear depressed or anxious, and denies feeling depressed. The hospice chaplain reports that she is at peace with dying, and has a strong faith.
The daughter remains devoted to her mother and wants to continue to provide care in the home, but is feeling severe financial pressure after two months of unpaid leave. This is creating guilt feelings for her. Other family members visit, but have not helped with the patient’s care.
Study Questions:
- What are the main issues to consider in the care of Mrs. Smith?
- What pharmacologic and nonpharmacologic care options should be considered?
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The University of Kansas Medical Center