Palliative Care – Makes Difference  for  Patient Dying in Hospital

 

Joshi A. Y.^1*,  Darekar A. B¹  and Saudagar R. B.²

¹Department of Pharmaceutics, R.G. Sapkal College of Pharmacy, Anjaneri, Nashik-422213, Maharashtra, India.

²Department of Pharmaceutical Chemistry, R. G. Sapkal College of Pharmacy, Anjaneri, Nashik-422213, Maharashtra, India.

 

ABSTRACT:

Typically, these measures are used to achieve comfort for the patient rapidly; diagnostic or therapeutic manoeuvres that might be appropriate for palliation in earlier stages of the illness are usually not considered in this context. Many elements of this approach can be used to ease patients’ distress in other phases of a life-threatening illness and in nonhospital settings, and they can also be applied to relieve symptoms in patients with less grave conditions.

 

The goal of palliative care is to relieve the suffering of patients and their families by the comprehensive assessment and treatment of physical, psychosocial, and spiritual symptoms experienced by patients. As death approaches, a patient’s symptoms may require more aggressive palliation. As comfort measures intensify, so should the support provided to the dying patient’s family. After the patient’s death, palliative care focuses primarily on bereavement and support of the family. The term “comfort care” is used here to describe a set of the most basic palliative care interventions that provide immediate relief of symptoms in a patient who is very close to death.

 

 

 

 

INTRODUCTION:

While dying is a normal part of life, death is often treated as an illness. As a consequence, many people die in hospitals, alone and in pain. Palliative care focuses primarily on anticipating, preventing, diagnosing and treating symptoms experienced by patients with a serious or life-threatening illness and helping patients and their families make medically important decisions. The ultimate goal of palliative care is to improve quality of life for both the patient and the family, regardless of diagnosis. Although palliative care, unlike hospice care, does not depend on prognosis, as the end of life approaches, the role of palliative care intensifies and focuses on aggressive symptom management and psychosocial support.

 

Helping patients and their families understand the nature of illness and prognosis is a crucial aspect of palliative care near the end of life. Additionally, palliative care specialists help patients and their families to determine appropriate medical care and to align the patient’s care goals with those of the healthcare team. Finally, establishing the need for a medical proxy, advance directives, and resuscitation status is an integral part of palliative care at the end of life.¹

 

MODELS OF CARE:

The traditional medical treatment model has become dichotomous, leading physicians to provide curative or aggressive treatment initially and to initiate comfort care only when other measures have failed. Palliative medicine establishes goals to relieve suffering in all stages of disease and is not limited to comfort care or end-of-life care.² The terms palliative care and hospice care are sometimes used interchangeably. According to the National Quality Forum, hospice care is a service delivery system that provides palliative care/medicine when life expectancy is 6 months or less and when curative or life-prolonging therapy is no longer indicated. Therefore, it is important to distinguish that although hospice provides palliative care, palliative care is not hospice³. Art Frank, reflecting on his experience of serious illness, writes “Care begins when difference is recognised. There is no ‘right thing to say to a cancer patient,’ because the ‘cancer patient’ as a generic entity does not exist.”⁴ Not all available therapeutic palliative care modalities are provided within the hospice service delivery system.

 

The Need for Comfort-Care Skills in Hospital Practice:

Although a growing proportion of deaths in the United States now occur at home or in nursing homes, hospitals remain a major site for end-of-life care; in 2010, 29% of deaths occurred in the hospital, and the average terminal admission lasted 7.9 days⁵. Multiple distressing symptoms affect hospitalized patients who have advanced, life-threatening illnesses, and some of these symptoms worsen as the patient approaches death.4 Poorly controlled symptoms have been documented in patients with advanced cancer, congestive heart failure, chronic obstructive pulmonary disease (COPD), and many other life-threatening conditions. The meticulous management of distressing symptoms is important in any phase of illness, but it becomes a primary focus near the end of life.⁶ Palliative care services can reduce the distress caused by symptoms and improve the quality of life of patients near the end of life. However, the current scarcity of board-certified palliative care specialists — a workforce shortage that is projected to continue far into the future — means that the responsibility for ensuring excellent end-of-life care for dying patients will continue to fall primarily on generalists and on specialists in areas other than palliative care^.7,8 Thus, familiarity with basic comfort measures is an essential skill for all clinicians who are caring for patients whose death is imminent.^6,9

 

Evidence-Based Management of Symptoms in Dying Patients:

Here we offer basic guidance regarding the management of common symptoms that affect hospitalized patients whose death is imminent.¹⁰ Because few high-quality studies address the management of symptoms in this population, we have often turned to investigations involving similar populations or to consensus statements on best practices for information. Our premise is that a brief, primarily pharmacologic, clinical guide should feature only a few essential, relatively inexpensive drugs that the clinician can become familiar with and learn to use confidently. Intravenous drug therapy is emphasized, since most hospitalized dying patients have an intravenous catheter, but suggestions for oral medications, which may be quite adequate in the hospital setting, are also included. If intravenous access is difficult to obtain, opioids and many other drugs can be administered conveniently by other routes, including through a subcutaneously placed butterfly needle that provides easy access for continuous or intermittent infusion¹¹

 

Fig no.1  Common symptoms in dying patient

 

Pain:

Pain is the symptom most feared by patients who have cancer and many other terminal conditions. Approximately 40% of hospitalized dying patients have moderate-to-severe pain in the final 3 days of life.¹²Assessment of this symptom should include regularly asking patients whether they have pain and, if so, to rate its severity. For example, “On a scale from 0 to 10, with 0 being no pain and 10 being the worst pain you can imagine, how much pain are you having now?”¹³ Nonverbal indicators of discomfort (e.g., a patient’s grimacing, moaning, or repeatedly rubbing a body part) can help the physician assess these verity of pain when patients are unable to provide a verbal response (e.g., in cases of advanced dementia).

 

Opioids are first-line agents for the treatment of moderate-to-severe pain (pain score, 4 to 10 on a 10-point verbal reporting scale). Morphine sulfate is commonly used; hydromorphone is an alternative. Oxycodone is a valuable oral agent, but there is no intravenous preparation. Various long-acting formulations, such as transdermal fentanyl patches, are appropriate for patients receiving stable opioid doses. Intravenous fentanyl has a number of advantages, primarily in critical care and perioperative settings. Methadone should be used only by clinicians who are familiar with its unique pharmacologic properties. The initial management of moderate-to-severe pain should consist of frequent bolus doses of an opioid with rapid adjustment until a satisfactory degree of analgesia is achieved (Table 3). When the patient is comfortable, the physician should prescribe a regular (basal) dose — which is typically administered as a continuous infusion — to prevent further pain, as well as intermittent bolus doses as needed for episodic worsening of pain (“breakthrough doses”).¹⁴

 

Neuropathic pain should be distinguished from somatic or visceral pain, since opioids alone may not provide adequate analgesia for patients with neuropathic pain.¹⁵ For patients with only a few days to live, adjuvant analgesics used for neuropathic pain may not have time to take effect; however, glucocorticoids may be of benefit in treating acute neuropathic pain.¹⁶ The combination of morphine with gabapentin produces analgesia that is more effective than that provided by either agent alone.¹⁷Other agents (such as transdermal lidocaine, antidepressants, and anticonvulsants) may be considered when longer survival is anticipated.

 

Table 1. Four Components of Total Pain¹⁸

P	P Physical problems, often multiple, must be specifically diagnosed and treated.
A	A Anxiety, anger, and depression are critical components of pain that must be addressed by the physician in cooperation with other healthcare Professionals.
I	I Interpersonal problems, including loneliness, financial stress, and family tensions, are often interwoven into the fabric of a patient’s symptoms.
N	N Not accepting approaching death, a sense of hopelessness, and a desperate search for meaning can cause severe suffering that is unrelieved by medications

 

Dyspnea:

Dyspnea, the subjective sensation of breathlessness, is a frequent and distressing symptom, particularly in dying patients. Opioids and benzodiazepines are the most widely prescribed medications for treating dyspnea. As death approaches, a clinician may use continuous infusions to manage symptoms and relieve suffering if scheduled or as-needed doses are not adequate. The clinician should continually assess the patient and make adjustments that will control symptoms.¹⁹

 

Cough:

Cough occurs at the end of life in up to 70% of patients with cancer and has been reported in 60% to nearly 100% of dying patients with various nonmalignant diseases20. Opioids, which act centrally to suppress the cough center, have been shown to be effective antitussive agents²¹ and may work well at low doses²². Studies have also shown that gabapentin is effective for chronic cough²³.

 

Xerostomia:

Dry mouth, or xerostomia, is a common issue among patients at the end of life. Its causes include medications (e.g., anticholinergic agents, opioids, and antihistamines), radiotherapy to the head and neck, and dehydration. Strategies to minimize dry mouth include the discontinuation of unnecessary treatment with drugs that may contribute to the problem and the use of saliva stimulants, saliva substitutes, and other treatments. Parasympathomimetic medications (e.g., pilocarpine and cevimeline) are effective for improving xerostomia but are administered orally, so their use may not be practical for many dying patients.²⁴

 

Excessive Oral and Pharyngeal Secretions:

The inability to clear oral and tracheobronchial secretions is typically observed in the final days of life and can lead to gurgling sounds in the throat, sometimes referred to as a “death rattle.” Although family members and staff are often distressed by these sounds, they are unlikely to be disturbing to the dying patient,²⁵ since they typically occur when the patient is unresponsive and lacks an effective cough reflex. The production of “grunting” sounds by the vocal cords is also common in dying patients.²⁶ Simply repositioning the head may reduce these sounds and reassure loved ones that the patient is not in distress.

 

No convincing evidence beyond clinical reports supports the commonly recommended use of antimuscarinic agents (e.g., atropine and glycopyrrolate) in patients with noisy breathing due to terminal respiratory secretions  27. A trial of glycopyrrolate can be considered, but we do not recommend its routine use, especially given the risk of such side effects as xerostomia, delirium and sedation. Rather, clinicians should reassure and counsel family members and staff about the unlikelihood that the patient is experiencing discomfort from excessive secretions and about the lack of benefit and potential harm of treatment.

 

Nausea and Vomiting:

Common causes of nausea and vomiting near the end of life include reactions to opioids and other medications, uremia, bowel obstruction, gastroparesis, ascites, and increased intracranial pressure. Some cases of nausea and vomiting can be treated according to their cause: glucocorticoids when symptoms are due to increased intracranial pressure²⁸ metoclopramide in cases caused by gastroparesis,²⁹ muscarinic acetylcholine receptor antagonists (such as scopolamine) or antihistamines (such as promethazine) forsymptoms of vestibular origin²⁸ and perhaps octreotide and glucocorticoids for malignant bowel obstruction.³⁰ Most episodes of nausea and vomiting near the end of life have multifactorial or uncertain causes.³¹ The evidence supporting the efficacy of various antiemetics or of a single preferred agent in dying patients is limited. Haloperidol is recommended in much of the literature on palliative care, but metoclopramide is also favored²⁸ Serotonin antagonists (e.g., ondansetron) are first-line agents in chemotherapy-related nausea and vomiting, and they may also be used alone or added to other dopamine-receptor antagonists, such as haloperidol, metoclopramide, and first-generation or second-generation antipsychotics (e.g., prochlorperazine and olanzapine).²⁸ Glucocorticoids are used in many situations, although a randomized, controlled trial comparing metoclopramide alone with metoclopramide plus glucocorticoids did not show a greater benefit in association with the latter regimen³². Benzodiazepines are used to prevent or treat anticipatory nausea and vomiting in patients receiving chemotherapy, but they may also have a more general role in treating nausea and vomiting when it is associated with anxiety.²⁸

 

Fever:

Dying patients may have troubling fevers in the final days or weeks of life. The cause is often unknown, but they may be due to infection, neoplasm, medication, or neurologic injury. Acetaminophen and NSAIDs are the first-line agents for the treatment of these fevers. Dexamethasone also has antipyretic properties and should be tried when treatment with the firstline agents fails. Antibiotics may have a role when a specific infection is being treated and when their use is consistent with the patient’s goals (e.g., for alleviating a cough due to bronchitis), but they have not been shown to be generally effective in relieving fevers in the final week of life.³³

 

Delirium:

Confusional states are regularly encountered inpatients as death approaches.³⁵ The cause is often multifactorial and may include organ failure, effects of medications, inadequately treated pain, disease of the central nervous system, and infection. The major features of these states include acute changes in the patient’s level of consciousness (either hyperactive or hypoactive) or attention and disordered thinking, but delirium may also take a great variety of forms, such as restlessness or suspiciousness. Clinicians often overlook subtler forms of delirium, whereas family members unfortunately may misinterpret even moderately aberrant behavior by the patient as a reflection of normal cognitive processing (e.g., they may rationalize the patient’s behavior as resulting from a lack of sleep). There is little or no high-level evidence from meta-analyses or well-designed trials to guide the management of delirium in the terminal phase of life.^34,36 Antipsychotic agents are regularly used as the initial pharmacologic treatment. Haloperidol has long been the preferred initial treatment for both agitated, or hyperactive, delirium (characterized by agitation, restlessness, or emotional lability) and hypoactive delirium (characterized by flat affect, apathy, lethargy, or decreased responsiveness)³⁷ in patients receiving palliative care, but atypical antipsychotics (e.g., olanzapine and quetiapine) have recently been shown to be equally effective³⁸. The familiarity with and versatility of haloperidol.

Restlessness:

Providers should recognize the signs and symptoms of the restlessness associated with delirium at the end of life (Table 2).³⁹ The most common identifiable cause of delirium in the hospital setting is medication: anticholinergics, sedative-hypnotics (eg, benzo diazepines), and opioids. Delirium and restlessness at the end of life are usually characterized by anguish (spiritual, emotional, or physical), anxiety, agitation, and cognitive failure. The treatment of terminal delirium usually requires the use of a major tranquilizer such as haloperidol.⁴⁰

 

Table 2. Signs of End-of-Life Restlessness

Skin mottling and cool extremities

Mouth breathing with hyper extended neck

Respiratory pattern changes such as Cheyne-Stokes

Calling out for dead family members or friends

Talking about packing bags, taking a trip, going for a car ride (any reference to preparing for a trip)

Periods of deepening somnolence.

 

Psychosocial, spiritual and bereavement support:

Once the physical adverse symptoms and distress have been successfully addressed, it is important to broaden the integrated response of the interdisciplinary treatment team to address the psychosocial and spiritual issues that are an inherent part of the dying process. A comprehensive psychosocial and spiritual assessment allows the team to lay a foundation for healthy patient and family adjustment, coping, and support. Skilled expert therapeutic communication through facilitated discussions is beneficial to maintaining and enhancing relationships, finding meaning in the dying process, and achieving a sense of control while confronting and preparing for death (Table 3).⁴¹ Compassionate palliative care requires a professional readiness of those specialized in this field to explore the integrity-preserving issues that will foster growth in dignity and transcendence. Reflective openended questions are key in optimizing this communication and assessing the willingness of the patient and caregivers to engage. Physicians, psychologists, nurses, social workers, and chaplains can assimilate and negotiate the interpersonal relationship skills and intimacy required to enhance the patient’s peace and psychosocial spiritual comfort.⁴¹

 

Table3.  Taking a Spiritual History.⁴²

S	for spiritual belief system
P	for personal spirituality
I	for integration with a spiritual community
R	for ritualized practices and restrictions
I	for implications for medical care
T	for terminal-events planning

 

Table 4. Psychosocial and Spiritual Assessment of the Patient With a Life-Threatening Illness: Sample Screening Questions

Psychosocial Assessment Domain	Screening Questions
Meaning of illness	‘‘How have you made sense of why this is happening to you?’’ ‘‘What do you think is ahead?’’
Coping style	‘‘How have you coped with hard times in the past? What have been the major challenges you have confronted in your life?’’
Social support network	‘‘Who are the important people in your life now? On whom do you depend and in whom do you confide about your illness?’’ ‘‘How are the important people in your life coping with your illness?’’
Stressors	‘‘What are the biggest stressors you are dealing with now?’’ ‘‘Do you have concerns about pain or other kinds of physical suffering? About your and your family’s emotional coping?’’
Spiritual resources	‘‘What role does faith or spirituality play in your life? What role has it taken in facing difficult times in the past? Now?’’
Psychiatric vulnerabilities	‘‘Have you experienced periods of significant depression, anxiety, drug or alcohol abuse, or other difficulties in coping?’’ ‘‘What kinds of treatment have you had and which have you found helpful?’’
Economic circumstances	‘‘How much of a concern are financial issues for you?’’
Patient-physician relationship	‘‘How do you want me, as your physician, to help you in this situation? How can we best work together?’’

 

Models of Palliative Care Delivery Hospitals:

The most common setting for nonhospice palliative care services in the United States, and in much of the world, is the acute care hospital. Initially established within academic medical centers in North America, palliative care programs have spread to other hospital types. Indeed, over the past decade, palliative care programs have grown by more than 150%, such that almost 90% of hospitals with 300 beds or more and two thirds of hospitals with 50 beds or more now have palliative care programs.⁴³ Beginning in 2011, the Joint Commission established the Advanced Certification for Palliative Care Programs.To the date, 82 programs have received this certification.⁴⁴ Within hospitals, the primary model of care delivery is the interdisciplinary consultation team.Large hospitals and mature programs may also include dedicated inpatient units. In addition to these traditional models, new service-delivery models and innovations include dedicated ICU teams, comanagement models, in which a palliative care specialist joins an existing specialty team (e.g., oncology), and triggers for automatic palliative care referrals. Multiple randomized, controlled trials and a few observational studies that have compared the outcomes in seriously ill patients who were referred to hospital-based palliative care teams with the outcomes in patients who received usual care have shown reduced symptom distress,^45-47 enhanced quality of life, and decreased spiritual distress among the patients referred to palliative care. Although several quasi-experimental studies have also shown reduced costs and resource utilization, no formal cost-effectiveness studies (i.e., measuring both costs and a range of patient and family outcomes) have been completed to date.⁴⁸

 

Community:

Historically in the United States, community based palliative care was available only through hospice programs and, therefore, available only to patients with a prognosis of survival of  6 months or less who had decided to forgo further curative treatments. Hospice continues to provide the largest proportion of palliative care in home based settings, but this care is provided for limited time spans and only during the final stages of disease. The overall quality of and satisfaction with hospice care has been consistently high.⁴⁹In the past decade, community-based models of palliative care have been developed to serve seriously ill people who are not eligible for hospice. These programs are evolving rapidly as a result of the Affordable Care Act (ACA), which expanded cost-sharing programs (e.g., accountable care organizations), created bundled-payment programs, and encouraged the formation of commercially managed Medicare and Medicaid programs. Because of the incentives provided in these new programs, private payers and Medicare Advantage plans have been early innovators in developing palliative care programs because of the potential of these programs to reduce costs and improve quality. These programs use interdisciplinary palliative care teams to establish clear goals of care, enhance symptom management and caregiver support in the home setting, coordinate care, and provide an extra layer of support to treating physicians.^50,51

 

Long term care:

Approximately 1.8 million U.S. residents live in nursing homes, and this number is expected to more than double by 2030.^52,53 The palliative care needs of this population are vast. More than 25% of elderly persons die in nursing homes, 67% of persons with advanced dementia live their final days in this setting,16 and more than half of nursing home residents require extensive or complete assistance with activities of daily living.⁵² Currently, there are three models for delivering palliative care in nursing homes. The most established model is hospice. Many nursing homes contract with a hospice agency for services, and the percentage of persons in nursing homes who received hospice services before they died increased from 14% in 1999 to 33% in 2006.⁵⁴ As compared with nursing home care that does not include hospice, hospice use in nursing homes is associated with lower rates of invasive therapies and hospitalizations, improved management of pain and symptoms, and higher family satisfaction with care.⁵⁴ The 6-month prognostic requirement for hospice eligibility greatly limits access, however, given the duration of need and the unpredictable prognoses of most nursing home residents. Another model is palliative care consultation, in which an external palliative care physician or nurse practitioner provides recommendations to the nursing home clinicians and bills services under Medicare Part B. Difficulties related to this model include a lack of reimbursement mechanisms for nonphysician members of the palliative care team and a reliance on the nursing home staff — who may not have palliative care training — to implement and follow through on recommendations. Finally, some nursing homes have developed internal palliative care teams or specialized units, which are focused primarily on residents with advanced dementia.

 

 

Table 5.Palliative care compared with hospice:

Characteristics	Palliative care	Hospice
Model of care	Interdisciplinary team, including physicians, nurses, social workers, chaplains, and staff from other disciplines as needed;primary goal is improved quality of life	Interdisciplinary team, including physicians, nurses, social workers, chaplains, and volunteers, as dictated by statute; primary goals are improved quality of life and relief of suffering(physical, emotional, and spiritual)
Eiligibility	Patients of all ages and with any diagnosis or stage of illness; patients may continue all life-prolonging and disease-directed treatments	Patients of all ages who have a prognosis of survival of ≤6 mo, if the disease follows its usual course; patients must forgo Medicare coverage for curative and other treatments related to terminal illness
Place	Hospitals (most common), hospital clinics, group practices, cancer centers, home care programs, or nursing homes	Home (most common), assisted-living facilities, nursing homes, residential hospice facilities, Inpatient hospice units, or hospice-contracted inpatient beds
Payment	Physician and nurse practitioner fees covered by Medicare Part B for inpatient or outpatient care; hospital teams are included within Medicare Part A or commercial insurance payments to hospitals for care episodes; flexible bundled payments under Medicare Advantage, Managed Medicaid, ACOs, and other commercial payers	Medicare hospice benefit; standard hospice benefit from commercial payers is usually modelled after Medicare; Medicaid, although coverage varies by state; medication costs are included for illnesses related to the terminal illness

 

 

CONCLUSION:

Palliative care in the ICU has come of age. Its guiding principles are more important than ever in increasingly pluralistic societies. Ensuring that patients are helped to die with dignity begs for reflection, time, and space to create connections that are remembered by survivors long after a patient’s death. It calls for humanism from all clinicians in the ICU to promote peace during the final hours or days of a patient’s life and to support the bereaved family members. Ensuring death with dignity in the ICU epitomizes the art of medicine and reflects the heart of medicine. It demands the best of us.

 

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Accepted on 28.04.2017        © RJPT All right reserved