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Introduction to palliative care
The last century in the United States has seen a cultural shift in the way that people experience illness and care at the end of life. Tremendous technologic advances in health care have increased life expectancy and ushered in a new era of caring for patients with increasingly complex acute and chronic illnesses. As a call for greater quality in end-of-life care has emerged, the specialty of palliative care has developed to better address the specific needs of patients and families coping with serious illness.
Defining palliative care
The World Health Organization defines palliative care as:
An approach that improves the quality of life of patients and their families facing the problem associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual.[1]
Palliative care specialists should also be skilled in facilitating communication, advance care planning, discussion of patient and family goals of care, quality improvement efforts, and in caring for the dying and bereaved.[2] Palliative care is optimally delivered throughout the disease trajectory by an interdisciplinary team made up of palliative care physicians, nurses, social workers, and chaplains.
Although the specialty of palliative care maintains its roots in the hospice movement, a distinction must be made between palliative care and hospice. Whereas palliative care can be integrated into the care of any patient with serious illness at any stage of their disease process, hospice care is typically provided during the last six months of the patient’s life, when the decision to forego curative treatment has been determined to be appropriate. Palliative care can be provided along side curative or disease-directed therapy to maintain quality of life and patient-centered care. This is often achieved in collaboration between the patient’s primary medical team consisting of primary care providers, subspecialty providers, and palliative medicine interdisciplinary teams.
The growth of palliative care and improvements in quality care at the end of life
According to the Center to Advance Palliative Care (CAPC) the United States has seen a substantial rise in the prevalence of hospital-based palliative care programs, with 85% of hospitals with greater than 300 beds reporting the presence of an interdisciplinary team.[3]
There has been compelling evidence to suggest that palliative care interventions are associated with improved outcomes in areas such as symptom control, quality of life, mood, less aggressive treatment at the end of life, and, notably in one study, longer median survival.[4–6] Palliative care consultation for seriously ill hospital patients is associated with a reduction in overall health-care costs,[8–13] decreased ICU length of stay,[11–13] and improved patient, family, and provider satisfaction and perception of patient care outcomes.[7, 9, 14]
Specialist versus generalist palliative care
As the need for improvement in care for those coping with serious illness has been recognized, the demand for palliative care specialists and programming has grown significantly. Although the existence of hospital-based palliative care consultation teams has become more prevalent, gaps in funding and work force resources present barriers to meeting the complex needs of patients.[15–17] Furthermore, it has been suggested that this reliance on specialist care can, in some cases, add another layer of complexity and expense to the care of the seriously ill.[18]
Some essential aspects of the delivery of palliative care can be successfully provided by the patient’s primary care provider or existing specialist. Since this relationship is often times developed over the course of years spent caring for the patient, an opportunity exists to drawn on this therapeutic relationship in such activities as advance care planning and discussion of patient and family goals. If the needs of the patient begin to take on greater complexity, such as in instances of refractory pain and symptom management or with management of truly complex decision making or conflict, then the palliative care specialist can work in collaboration with the generalist provider to address these issues. With this collaborative model, needs of a greater number patients can be met, while supporting the essential role of both generalist and specialist palliative care providers.
It is important to recognize the importance of ongoing professional education to help foster competency in the provision of generalist palliative care. Programs such as Education in Palliative and End-of-Life Care (EPEC), Oncotalk and End-of-Life Nursing Education Consortium (ELNEC) were developed to teach and reinforce basic skills needed for the delivery of primary level palliative care.[19–21] These courses have been used to teach both students and practicing clinicians such subjects as pain and symptom assessment and management, goals of care discussion, advance care planning and care for the imminently dying patient.[21] Increasing access to educational programs such as these, coupled with the continued growth of access to palliative care specialists, will best serve to promote quality in palliative care.
Navigating communication at the end of life
Successful communication with patients and families about issues surrounding serious illness and end-of-life care is an essential skill for all health-care providers. However, research has consistently shown that clinicians feel inadequately prepared in the provision of end-of-life care. This is particularly true surrounding the delivery of bad news and discussion of death and dying.[22–24] It is important to note, however, that patients and families often expect to be well informed about their diagnosis, and to act as active participants in collaborative decision making with their health-care provider.[25, 26] An important step in establishing a relationship with patients can be to determine how much and what type of information they would like to receive by asking them about their preferences.
Communication with patients and families who are facing serious or life-threatening illness can be challenging, but can be achieved using a systematic approach that encourages active listening, clear language surrounding medical information and discussion of patient- and family-centered goals (see Table 49.1). When discussing medical information with patients or with their families, it is important to first establish their current understanding of the illness. This can help to clarify misperceptions and inform the direction of the conversation. Once the clinician has a good understanding of the patient perspective, the current medical status and options can be reviewed with careful attention to avoid medical jargon and overly technical information. At this point, it can be helpful to discuss prognosis in terms of an expected range of hours to days, days to weeks, weeks to months, and so on. Although uncertainty should be acknowledged, prognostication provides the patient and family the opportunity to set their goals and expectations according to their own values and preferences.
1. Preparation
|
2. Establish proper setting Private, comfortable; everyone sitting in a circle |
3. Introductions/goals/relationship
|
4. Family understanding of condition
|
5. Medical review/summary
|
6. Silence/reactions
|
7. Present broad care options/set goals
|
8. Translate goals into care plan
|
9. Document and discuss:
|
10. Managing conflict
|
As the patient and family take time to assimilate information and state their own goals, take a moment to respond to expressed emotion or allow for brief silence. After mutual understanding is established and questions are answered, relevant options and plans can be discussed. It is often helpful to make specific recommendations regarding interventions that will work to achieve the patient stated goals. For example, the clinician may make recommendations regarding resuscitation, artificial nutrition/hydration, returning to the hospital, or continuation of specific disease directed therapies. Supportive statements such as “I have seen caring families choose this option, and have also seen caring families choose this other option,” can help to facilitate trust for further discussion at a later time. At the close of the conversation, a clear summary of decisions made and subsequent plans for next steps and follow-up should be discussed. It is also important to review and debrief with participating health-care providers; this will help to encourage continuity and cohesion within the interdisciplinary team.
Even as this approach to communication is designed to for the semi-formal discussion of specific goals of care, the principles can be applied in difficult conversations throughout the relationship with the patient. Skill in responding empathetically, in delivering prognostic information, and in using clear language surrounding medical information should be practiced and applied to daily patient interactions.
Symptom management
Patients often have a significant symptom burden at the end of life; pain, nausea, delirium, and dyspnea are among the most common. Frequently, patients have untreated symptoms in the last days to hours of life, with up to 90% of patients experiencing pain during the last week of life.[27] Recognizing and aggressively treating these symptoms provide both patient and family with a “good death.” The following is a brief review of assessment and treatment of common symptoms at the end of life.
Pain
Assessment
Assessment of pain is critical at the end of life. This varies based on whether the patient is responsive at the time of assessment or not. If able to communicate, the initial evaluation of any patient’s pain needs to take into account the current pain symptoms as well as any prior history of pain. Manifestations of chronic or acute pain in elderly, seriously ill patients are often complex and multifactorial. For example, age-related osteoarthritis may often obscure complaints of new bony or joint pain that may be from metastatic malignancy. A thorough pain assessment must include, via patient self-report if able, a description of the location, quality, onset, and exacerbating and relieving factors. Most mistakes in diagnosing and effectively treating pain in severely ill patients come from neglecting some aspect of the pain assessment.[28] The Agency for Health Care Policy and Research (AHCPR) guidelines describe pain as “an unpleasant sensory and emotional experience associated with actual or potential tissue damage or described in terms of such damage.”[29] Thus, one important aspect of effective pain control in seriously ill patients is to believe the patient or family member’s report of pain.
The quality of a patient’s pain can commonly be described in terms such as sharp, stabbing, throbbing, shooting, or tingling. This assessment helps in the determination of the type of pain the patient experiences. Nociceptive pain, which is derived from pain receptors, is either visceral or somatic. Visceral pain is often described as deep, aching and colicky, is poorly localized, and often is referred to cutaneous sites, which may be tender to palpation. In cancer patients, this pain often results from stretching of viscera by tumor growth. Somatic pain is often reported as constant, aching, or gnawing. Neuropathic pain affects peripheral nerves, spinal cord, or the central nervous system (CNS).[30] It is often described as burning, aching, or shooting in quality and can be persistent or spontaneous.[31]
Assessment of pain should include, when able, some objective measure of severity. Various scales exist to document pain, such as the Visual Analog Scale (VAS) or the numerical pain distress scale. An important aspect of severity of pain and degree of relief is to assess what patient goals and expectations are. Because many elderly adults underreport pain, engaging with the patient about what to expect from therapy is critical to the success of treatment.[32]
In nonverbal patients, the assessment of pain has added complexity. Observation of patient behaviors is recommended in non-verbal, seriously ill patients.[33] Behaviors that are commonly considered pain related include facial grimacing, moaning, or rubbing a body part. Some behaviors are less obvious. These include agitation, restlessness, irritability, or confusion. Various assessment tools are available to guide assessment of pain in elderly patients such as the pain assessment in advanced dementia scale (PAIN-AD) or the checklist of nonverbal pain indicators (CNPI). As a patient becomes nonverbal during the dying process, previous pain should be assumed still present and must continue to be effectively treated.[27]
Management
Although older patients are often at higher risk of drug-related adverse effects, appropriate treatment of pain in seriously ill patients is crucial to improve quality of life. Undertreatment of pain in elderly patients is associated with significant adverse outcomes, including functional impairment, falls, anxiety and depression, and greater health-care costs.[34] Opioid and nonopioid adjuvants should be the cornerstone of treatment in all severe, persistent pain. For most patients with cancer-related or other severe pain, the use of opioids is necessary and the benefits vastly outweigh the risks. Often, elderly patients’ pain is undertreated because of concern of use of opioids.[36] Selection of opioids should take into account end-organ function, availability, cost, ease of use, and patient’s past experiences. A combination of short- and long-acting opioids is crucial to successfully treating patients with persistent pain. Often, the use of immediate-release opioids is a first step in pain control, especially in previously opioid-naïve patients.
There are various age-related changes associated with the effectiveness and pharmacodynamics drug properties, including changes in metabolism, distribution, and excretion.[35] Decreases in hepatic and renal function are often present in healthy elderly patients, let alone in the seriously ill elderly cohort. Decreased metabolism and excretion can result from poor end organ function, and should be taken into account when dosing opioids. Ultimately, very effective and safe pain relief can be achieved with individualized monitoring and titration. In the absence of obstruction or problems with absorption, an alert elderly patient can tolerate oral medications. There is no change in oral bio-availability in elderly patients.
Considerations for selection of opioid
Morphine is the most commonly prescribed opioid because of cost and availability.[37] There are long-acting and immediate-release oral tablets, elixir, suppositories, and intravenous or subcutaneous dosing options. Elderly patients with impaired renal or hepatic function should be monitored closely. In patients with renal failure, the metabolites of morphine may accumulate and ultimately cause neurotoxicity.[38] Oxycodone, a semisynthetic opioid similar in bioavailability to morphine, is available in oral preparations. Oxycodone is hepatically metabolized and renally excreted as well.[39] Hydromorphone (Dilaudid) is a semisynthetic derivative of morphine which is available as oral tablets, liquid, suppository, and parenteral formulations. The metabolite of hydromorphone is renally excreted and associated with neurotoxicity at increasing doses as well.[40] Fentanyl is a synthetic opioid and estimated to be 80 times more potent than morphine. In patients with true opioid allergies, fentanyl is a safe alternative because it is completely synthetic. Because of its high lipid solubility, fentanyl is available as a transdermal patch. This is a safe alternative in elderly patients who cannot swallow, but should never be used first-line in opioid naïve patients. Fever increases the rate of absorption of transdermal fentanyl.[42] Intravenous fentanyl is also available and is a safe alternative in patients with compromised renal function. Both ketamine and methadone can be safely used in elderly individuals, but because of their variable half-life, unpredictable side effect profile and high risk of accumulation without careful monitoring and titration, these medications should be managed by pain and palliative medicine specialists.
Understanding equianalgesic conversions is the cornerstone to safely starting, maintaining or converting patients with serious illness on any opioids. (See Table 49.2 for equianalgesic conversions.)
Dosing and titration
Opioid therapy must be selected on an individual bases, taking into account both medication of choice and route of administration. Intravenous and subcutaneous dosing is often required at the end of life for various reasons. Patient-controlled analgesia (PCA) pump use is often beneficial in elderly patients with severe pain. Indications for PCA pump include: unable to tolerate oral route, escalating pain that needs to be managed rapidly, severe incident pain, and dose-limiting side effects with other routes of administration. Contraindications to the use of a PCA pump are primarily centered on concern for delirium or patient ability to participate in their own care. Titration of opioids is often required frequently in patients nearing the end of life. Escalation of both long-acting and immediate release formulations may be necessary to maintain adequate pain relief. The immediate release formulation should be between 10% and 20% of the total daily dose of the long-acting opioid. Increases in opioids, via all routes of administration, can be done safely every 24 hours. To effectively control pain, the minimum increase should be 25% of the total daily dose and can be as much as 100% increase, depending on the frequency of the use of the breakthrough opioid and the severity and circumstances of the pain syndrome. The dose should be increased until adequate pain control is achieved or intolerable side effects occur.
Although there is no specific maximum dose of any one opioid, if pain is no longer controlled on a specific regimen or dose titration yields treatment-limiting toxicities, opioid rotation may be necessary. This helps achieve a favorable balance between analgesia and side effects.[43, 44] The principle of incomplete cross-tolerance is important to the successful rotation from one opioid to another. Cross-tolerance occurs when continued use of one opioid leads to tolerance of another substance with similar pharmacologic properties. Incomplete cross-tolerance occurs with opioids, and thus dose decreases are needed. The percentage of decrease required is variable; the amount of pain the patient is currently experiencing, end organ function and other comorbidities may force a greater or lesser percentage decrease. The usual range of dose decrease is between 25% and 50%.[45]
Adjuvant analgesics
In patients with serious illness, many nonopioid medications are useful as adjuvants in the treatment of severe pain. Adjuvant analgesics may be used alone or in combination with opioids. These include anticonvulsants, antidepressants, corticosteroids, and topical anesthetics. Neuropathic pain is often best treated with nonopioid medications. Current guidelines recommend tricyclic antidepressants (TCA) or dual reuptake inhibitors of both serotonin and norepinephrine as the first line treatment, along with calcium channel binding agents (gabapentin and pregabalin) for neuropathic pain.[46] Side effects of TCAs primarily limit their use in elderly patients. Common side effects include urinary retention, constipation, and delirium. As with most drugs in elderly patients, starting at a low dose with a slow titration is helpful to monitor and avoid serious side effects or drug–drug interactions.
Corticosteroids are useful in various types of pain syndromes. They are the standard of care in malignant spinal cord compression. In addition, bony pain from malignant metastasis and inflammatory pain from invasion of abdominal viscera also respond well to the anti-inflammatory effects of corticosteroids. Dexamethasone is commonly the preferred agent because of its duration of action as well as its limited effects on blood glucose levels.[37] The evidence on the benefit of steroids in cancer patients is not high quality, but corticosteroids have a lower side effect profile than NSAIDs in elderly terminal cancer patients and can be useful in the management of nausea and vomiting as well.[47]
Additionally, interventional procedures to manage pain are, at times, very valid options in patients at the end of life. Specifically in cancer patients, nerve blocks (celiac plexus, superior hypogastric, lumbar) are effective in relieving severe visceral and neuropathic pain from malignancy.[48]
Nonpharmacologic approaches to pain management
Although there is not a large body of evidence, many nonpharmacologic, complimentary therapies can provide pain relief in elderly patients nearing the end of life. Various sources recommend trials of acupuncture for pain as well as other cancer-related symptoms owing to the minimal side effects of treatment. Although no high-quality data is available, a 2011 meta-analysis showed no significant side effects of acupuncture, but they were unable to recommend acupuncture for adults with cancer pain due to lack of evidence of benefit.[49] Additional complimentary approaches to pain management include Reiki massage, meditation, therapeutic massage, physical therapy, as well as art and music therapy. Many of these are often employed through hospice programs. All of these can be used alone or in combination with pharmacotherapy.
Nausea and vomiting
Mechanisms
Nausea and vomiting are common symptoms during the end of life. These cause significant physical and psychological distress for both patients and their families. Understanding the pathophysiology of nausea and vomiting is important in selecting the most beneficial therapy as well as avoiding polypharmacy. Various pathways mediate nausea and vomiting. See Table 49.3 for common pathways stimulated in nausea and vomiting.[50–53] These pathways provide input to the vomit center in the brain, resulting in either nausea or vomiting when a specific, minimum threshold is met.[50]
| Pathway | Input | Neuroreceptor |
|---|---|---|
| Vestibular system | Motion, labyrinth disorders | Acetylcholine, histamine |
| Chemoreceptor trigger zone | Drugs, metabolic disturbances, bacterial toxins | Dopamine, serotonin, neurokinin |
| Peripheral pathways | Mechanical stretch, GI mucosal injury, local toxins and drugs | Mechanoreceptors and chemoreceptors (serotonin) in GI tract and viscera |
| Cortex | Anxiety, sensory input, increased intracranial pressure, meningeal irritation | Acetylcholine, histamine, serotonin |
Assessment
A thorough history and physical exam is the first step in determining cause and subsequent treatment for nausea and vomiting. Once the most likely cause is established, determination of the specific mechanism and neuroreceptors involved will aid in targeted therapy and avoiding poly-pharmacy, a common complication in elderly patients. Various mnemonics exist to help guide a targeted physical exam and understanding of the likely cause. See Table 49.4 for one specific mnemonic useful in nausea and vomiting.[50–53]
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