When the Dying Patient Becomes Delirious, the Nurse Encourages the Family to:

Prim Care Companion J Clin Psychiatry. 2006; 8(six): 367–372.

Clinical Challenges to the Delivery of Cease-of-Life Intendance

End-of-life care presents many challenges (east.g., the direction of pain and suffering) for clinicians, likewise as for patients and their families. Moreover, the intendance of the dying patient must be considered inside the context of the psychological, concrete, and social experiences of a person'due south life.¹ Foremost among those who require finish-of-life care are the elderly, who are prone to loneliness, who frequently underreport pain, and who take a greater sensitivity to drugs and to drug-drug interactions.² Unfortunately, clinicians who are responsible for the treatment of patients at the cease of life ordinarily lack adequate training to help guide end-of-life decisions and to evangelize bad news to patients and families.^{three, 4} They must also face their own discomfort with discussions virtually decease and bargain with poor bounty for the time spent discussing cease-of-life intendance with patients and families. Given the unique procedure of each person'southward death, algorithmic strategies are frequently inadequate to guide patients, their families, and the clinicians who care for them through this circuitous and emotionally challenging process.

In the following sections, we will talk over the major challenges faced by dying patients and their families. We volition then annotate on the difficulties clinicians confront in caring for the dying patient. Lastly, nosotros volition brand several recommendations for improving the care of terminally ill patients and their families.

CHALLENGES FACED Past PATIENTS AT THE End OF LIFE

The challenges faced by the dying patient are substantial and potentially overwhelming. These challenges include concrete pain, depression, a variety of intense emotions, the loss of dignity, hopelessness, and the seemingly mundane tasks that need to be addressed at the finish of life. An understanding of the dying patient'due south feel should help clinicians improve their care of the terminally ill.

Pain

Hurting, and the fear of hurting, often drives the behavior of patients at the finish of life. In a survey of 310 patients with life-limiting illness,⁵ "freedom from pain" ranked most important in their considerations of the terminate-of-life process. Hurting, especially cancer-related hurting, is common; moreover, it is experienced by fifty% to ninety% of patients with advanced disease.⁶ Fortunately, over 90% of those with cancer-related hurting answer to bones analgesic measures; nonetheless, many patients fear that their suffering will progress unabated.^{6, 7} Although there is no evidence that the perception of nociceptive pain is altered by advancing age, the elderly are often unwilling to report their pain because they believe it is a normal symptom of aging and that their hurting is directly associated with the worsening of their affliction.

While nociceptive pain is commonly and successfully treated with nonsteroidal anti-inflammatory drugs and opioids, actual changes in the elderly demand attending when considering pharmacologic interventions. Declines in renal and hepatic function predispose the elderly to side effects and toxic effects of medications. In addition, pain is a notable risk factor for depression and suicide, peculiarly in those at the terminate of life, and it must be carefully assessed and monitored.⁸

Depression

Studies reveal that more than 60% of patients with cancer written report psychological distress, while nearly 50% of patients with varying stages of cancer fulfill diagnostic criteria for psychiatric disorders.^ix Low, which occurs in upward to 45% of terminally ill patients with cancer, has also been positively linked with thoughts of suicide.⁷ Patients who are particularly prone to suicidal ideation are older men with a diagnosis of cancer or HIV infection/AIDS and/or a history of hopelessness, delirium, and exhaustion.⁷ The presence and severity of clinical depression are both positively correlated with the severity of concrete illness, and, in some, a progressive disability to get out of bed and a decreased appetite may too advise major depression.⁸ Anxiety ordinarily co-exists with low, and it may be driven by fears of helplessness, a loss of control, abandonment, or hurting.¹⁰ When screening for low in patients with advanced disease, i must consider that anxiety, as well as organic mental disorders, may mimic the features of mood disorders.⁷ Furthermore, the concrete symptoms of final illness and its treatment (e.g., chemotherapy) can generate the neurovegetative symptoms of depression (e.g., fatigue, increased sleep, weight loss). Often the distinguishing cistron among clinical depression, demoralization, and organic causes of neurovegetative symptoms is the presence of anhedonia. Treating patients with terminal illnesses who also endure from clinical depression not but helps improve their mood, only too enhances their coping strategies and promotes their compliance with treatment.^eleven

Chochinov and colleagues¹² institute that assessment and diagnosis of depression in the terminally ill can be effectively addressed with the single question, "Are you depressed?" Also, the Infirmary Feet and Depression Scale¹³ (a psychological musical instrument adult to probe for depression in medically sick patients) can be used to appraise for depression in the dying patient. However, several studies accept confirmed that the clinical interview remains the best tool for the diagnosis of depression in the medically ill or the dying patient.^{7, ten}

Coping

Patients with advanced illness face up the challenge of coping with their disease on a daily footing. While some patients (known as "good copers") demonstrate optimism, practicality, resourcefulness, awareness, and flexibility, others (known as "bad copers") present with a variety of defensive styles in response to their diagnosis.^xiv These more "primitive" defenses include suppression or isolation of affect, projection, noncompliance, avoidance, and deprival, which may be manifest as a deliberate delay in treatment or as a disagreement between the patient and the doc about the presence, implications, or likely outcome of illness.¹⁵ A study of 189 individuals with cancer linked cognitive avoidance with poor psychological adjustment (to living with cancer) and suggested that the caste of deterioration in i's physical impairment correlates directly with one's levels of psychological distress.¹⁶ When associated with noncompliance, incidents of avoidance and denial become dangerous; noncompliance remains the number i modifiable take a chance gene for unfavorable outcomes in psychopharmacology.¹⁷

Nobility

For dying patients, a main affliction-related concern is the preservation of nobility, broadly divers in terms of being worthy of award, respect, and esteem. For many patients, dignity is directly related to the level of independence and autonomy retained through the class of illness. In a example series of fifty patients in an urban hospital diagnosed with advanced-stage cancers, Chochinov and colleagues¹⁸ found that a variety of factors were necessary for preserving dignity in the terminally ill. These factors included functional chapters, cognitive acuity, symptom management, and alleviation of psychological distress.^eighteen Furthermore, anguish virtually medical incertitude (i.e., not knowing, or existence unaware of, aspects of ane's health condition or treatment) and anxiety specifically associated with the process or apprehension of death and dying worsened a patient'south sense of dignity. Some other written report involving 213 terminally sick patients from 2 palliative care units^xix suggested that loss of dignity is closely associated with certain types of distress (such as the loss of independence for inpatients bars to the hospital, deterioration of physical appearance, and a sense of being burdensome to others) common amid the terminally sick. When coupled with heightened depression and a sense of hopelessness, the loss of dignity may lessen a patient's want to go on living in the face of imminent death.¹⁹

The Demand for Control

For a subset of terminally ill patients, maintaining a sense of control is a cardinal task of the dying process. This demand for control is prominent among patients who asking doctor-assisted suicide (PAS) in Oregon (where the do has been legal since 1997).^xx In a survey of 2649 Oregon physicians, Ganzini and colleagues²¹ studied the epidemiology of PAS in Oregon as well equally the characteristics of patients and physicians surrounding the request. The most common reasons for patients to request PAS were a loss of independence, a want to command the circumstances of expiry, readiness to die, and poor quality of life. Other symptoms associated with the request for PAS were pain, dyspnea, and fatigue; in add-on, wanting to maintain control and not wanting exist a burden on others is important for many dying patients.²² Ganzini and coworkers²³ farther refined this concept by interviewing Oregon physicians virtually their patients who had undergone PAS. These patients were universally described every bit having had strong personalities; they were determined and inflexible, and they wanted to control both the timing and the manner of their deaths. For virtually of these patients, the request was persistent, forceful, and ofttimes accompanied by refusal of palliative treatments. Regardless of the legality of PAS or a caregiver's particular opinion of it, physicians and nurses should strive to give such individuals as much command over their care as possible (to back up their coping style and help them maintain their dignity).

Other Aspects of the Dying Process

Patients who attain the end stage of advanced illness may too endure from a diversity of complications, including anorexia, weakness, and sexual dysfunction. Multiple interacting symptoms contribute to suffering (which is manifest by depression, cognitive disturbance, and interpersonal and spiritual crises) at the finish of life. Furthermore, dying patients and their families often have to bargain with complicated "practical" bug, such as fiscal bug (e.m., paying for home care) and legal issues (e.g., organizing wills or health care proxies). These seemingly mundane concerns tin cause a great bargain of distress for dying patients and their families. Physicians should exist aware of the possibility that these problems may contribute to patient distress and should be mindful of asking about them. Lastly, in those who are actively dying (i.east., the rapidly evolving process immediately preceding decease, which can be recognized hours to days before death), discomfort may be heralded by shortness of breath (a outcome of an aggregating of respiratory secretions).⁵

CHALLENGES FACED By CLINICIANS INVOLVED WITH END-OF-LIFE Care

Clinicians who oversee the handling of patients at the end of life often confront obstacles to providing optimal care. Amidst these obstacles are inadequate training for facilitating difficult conversations, insufficient compensation for the relational aspects of end-of-life intendance piece of work (as compared to invasive procedures), and personal discomfort with dying and death. These challenges must be considered alongside those faced by patients and families in the process of formulating improvements in terminate-of-life care.

Inadequate Training

The management of cease-of-life intendance and the process of engaging in difficult conversations are topics that are frequently neglected in medical education. The conventional pedagogic method of "encounter one, do 1, teach one" practical in medical teaching is typically absent when related to end-of-life care. Many medical and surgical residents (who are oftentimes the physicians responsible for eliciting a patient'southward treatment preferences at the end of life and for facilitating difficult conversations with families) receive inadequate training for these tasks. A survey of 1455 medical students, 296 residents (in internal medicine, full general surgery, and family medicine programs), and 287 faculty affiliated with 62 accredited U.S. medical schools revealed that merely 18% of medical students and residents received formal grooming in end-of-life care, and over forty% of residents felt unprepared to teach end-of-life intendance to younger clinicians in training.²⁴ A subsequent survey of 282 internal medicine residents in i customs-based program and ii university-based programs revealed that only 4% ever received useful feedback on conversations with patients and families from a senior resident, and only 7% had received useful feedback from an attending physician.²⁵

These statistics are particularly lamentable when compared with like studies conducted on medical instruction of invasive procedures (e.one thousand., arterial puncture, central venous line placement, and thoracocentesis). Conventional educational activity methods for invasive procedural skills involve planning ahead, demonstrating the procedure, observing the learner in action, providing feedback, and encouraging the learner's cocky-assessment. An informal study of 161 internal medicine residents in a university-based program revealed that only 6% of all conversations with patients and families facing end-of-life issues were observed or supervised by senior residents or kinesthesia, compared with the xc% of invasive procedure preparation sessions that were reportedly supervised by faculty members.²⁶

Even so, sure medical specialties (e.g., elderliness, oncology, and intensive care) seem to offer stronger preparatory programs for cease-of-life care and encourage the recognition of death equally office of the life cycle. A study of 230 geriatric medicine fellows revealed that 97% of physicians trained in geriatrics felt either moderately prepared or well prepared to treat a dying patient.²⁷ The majority of respondents had rotations in cease-of-life care, palliative care, or hospice care and maintained positive attitudes about caring for very ill and dying patients; moreover, they were explicitly instructed in the primal concepts involved in end-of-life care.²⁷

Insufficient Compensation

An issue that receives little formal attention amidst clinicians who care for dying patients is the way they are compensated for their work. Physicians who intendance for terminally sick patients and their families are often driven by an altruistic need to ease suffering. Withal, for many, altruism eventually confronts financial realities. It is reasonable to presume that continuing disparities in compensation betwixt physicians who spend much of their time talking to patients and families and those who spend much of their fourth dimension performing procedures may lead physicians who currently care for dying patients to grow resentful and keep talented individuals from inbound the field. It is well known that the Medicare resource-based relative value calibration compensates physicians more for invasive procedures (per minute of piece of work) than for evaluation and management procedures.²⁸ Evaluation and direction procedures include the all-encompassing discussions with patients and families that are frequently demanded of clinicians who provide end-of-life intendance. For case, a 2004 model of work value for cognitive work versus procedures²⁹ revealed that a encephalon magnetic resonance prototype with and without dissimilarity carries more than twice the number of relative value units as that carried by 25 minutes of counseling and word, and a diagnostic colonoscopy carries more triple the number of relative value units as that carried by cognitive-based visits.²⁹ More research is needed to examine whether these disparities in compensation actually lead to lower job satisfaction among physicians in the field or whether this organization has detrimental effects on patient care.

Personal Discomfort With Death

Many physicians, after 7 to 14 years of intensive grooming that focused heavily on science and technology, feel uncomfortable when direct addressing problems (peculiarly those apropos spiritual and emotional needs) faced by patients and families at the end of life. Attending to dying (particularly elderly) patients tends to focus on tangible questions directed toward a nurse such as "Are they eating?" or "How are they sleeping?" rather than on questions directed toward the patient similar "How are you lot doing?" and "What would you similar to do?"³⁰ Clinicians frequently experience uncomfortable against death because they relate to and identify with terminally ill patients and their families and resist doing and so in the name of professionalism. Death also means the loss of the patient; this may exist interpreted by medical caregivers equally that they have somehow failed in their piece of work.³¹

Additionally, a clinician's personal anxiety about expiry and disease may exist further incited by interactions with a dying patient. In particular, doctors frequently think of death as a sign of failure or as an enemy rather than every bit a natural and universal part of the life process. Furthermore, a patient'south dying process may remind the clinician of similar losses suffered in his or her own personal life, leading the medico to have surprisingly strong feelings toward this item patient (i.due east., counter-transference).³²

RECOMMENDATIONS FOR CLINICIANS

There are many clinical challenges inherent in the care of the dying patient. Nonetheless, in that location are many interventions that clinicians are able to perform to treat the emotional and physical symptoms of the patient at the end of life. Although a comprehensive discussion of these treatments is beyond the scope of this article, we will discuss a clinical arroyo to the dying patient as well as the major interventions that clinicians should be aware of.

The beginning stride in caring for dying patients is to avert clinical nihilism: that is, to avert thinking that in that location is nothing left to be done. Often patients and families capeesh a doctor for only listening to their concerns far more than than whatever specific physical intervention. Additionally, such an approach will allow the doctor to provide care that is better tailored to private patient needs and concerns.³³ Many patients are most afraid of non knowing what the process of dying is like, of pain, and of beingness left alone at the end of their lives. The engaged clinician tin can offering a neat deal of reassurance merely past telling patients what to look from the dying process, by treating their pain, and by promising non to carelessness them at the end (and past post-obit through with this promise).

The second issue for physicians treating dying patients is to recall that, even at the end of life, there are many conditions that tin and should exist treated to improve a patient'south quality of life. In fact, amongst patients requesting PAS in Oregon, those for whom physicians made "noun" interventions were more than probable to change their minds about wanting a prescription for a lethal medication.²¹

In defining its clinical do guidelines, the National Consensus Project for Quality Palliative Care (a consensus project of 5 national palliative care organizations) outlined eight domains that should be addressed (Table ane).³⁴ Main care physicians who care for patients with terminal illness should ensure that they address each of these domains (either directly or through referrals). The first is the structure and process of care. The work of caring for dying patients is best performed by a multidisciplinary team to assistance distribute the multiple tasks of this work then that staff can support each other during difficult times. The programme of care for the palliative care patient should be a product of an interdisciplinary assessment that includes both the patient and his or her family. Furthermore, this interdisciplinary construction recognizes that the care of the dying patient is associated with pregnant personal burdens for caregivers. Even the nigh experienced clinician should rely on colleagues for assist in facing the hard emotions of patients and their families, also as his or her ain memories and feelings.³⁴

Table i.

Domains of Quality Palliative Care^a

The 2d domain outlined by the National Consensus Project involves the physical aspects of care.³⁴ Hurting, respiratory symptoms, and gastrointestinal symptoms in item should be managed aggressively, while employing the best-available evidence. Physicians should assess their patient'southward pain regularly, preferably with validated instruments (east.g., counterpart scale), and treat it promptly. Respiratory symptoms can pb to significant feet and fear,³⁵ while gastrointestinal symptoms (east.g., opiate-induced constipation) can lead to significant discomfort.³⁶ In general, physical symptoms are best treated assertively, and clinicians should exist vigilant for signs of delirium or drug toxicity, especially in the elderly.

Psychological and psychiatric aspects of care are the tertiary domain.³⁴ Depression is encountered frequently in patients with concluding disease. It can be chief (caused by preexisting psychiatric disease), medication-induced (e.g., from corticosteroids or chemotherapy), or organic (e.thousand., from metastases or paraneoplastic syndromes). In patients with terminal disease, physical symptoms can be confused with neurovegetative symptoms of low; this makes depression difficult to diagnose. Therefore, psychological symptoms (due east.g., anhedonia and hopelessness) may be better indicators of low in this population. Regardless of cause, depression is treated in a like fashion (with judicious utilise of pharmacologic [due east.g., selective serotonin reuptake inhibitors and psychostimulants] and nonpharmacologic [due east.g., psychotherapy] treatments).³⁷ Physicians should consider referral to a psychiatrist for further evaluation every bit necessary.

Other psychiatric issues include anxiety and cerebral damage. If recognized, many of these conditions tin can be reversed or at least substantially ameliorated.

Other domains important for the treatment of the patient with terminal illness include tending to the social, cultural, and spiritual aspects of care.³⁴ Ofttimes interconnected, these 3 areas refer to successively larger spheres of connectedness—from the interpersonal (i.e., family and friends), to the cultural (i.e., connecting to a larger set of customs, traditions, and modes of communication), and to the existential (i.e., the way in which people understand their lives and deaths in view of ultimate significant and value). Ensuring that the needs of patients in these spheres are attended to is a meaningful task of those who treat the terminally ill.

Clinicians should feel comfortable engaging patients around their concerns in these areas. Notwithstanding, they should feel equally comfortable consulting or referring patients to social workers, chaplains, or psychologists. Only past paying attention to one'due south own limitations tin can the doctor caring for a dying patient best serve the patient.

The terminal 2 domains outlined by the National Consensus Project are caring for the imminently dying patient and ethical/legal concerns. These 2 domains are often interrelated, as pregnant ethical and legal problems often surface effectually the latter function of the dying process. Primary intendance physicians should do their utmost to recognize when the patient transitions to the active dying stage and should communicate finer with the patient and his or her family near their wishes regarding the dying process (e.g., the setting of death and the intensity of symptom direction). If not discussed previously, making a referral to a hospice is likewise an effective fashion to help care for the imminently dying patient and his or her family. Lastly, working with the patient and family to clarify issues of determination making at the end of life (e.g., What are the patient's wishes, and who volition be the patient'south surrogate when he or she is no longer able to make decisions?) allows patients and their caregivers to piece of work and communicate improve and helps them avert or meliorate ethical problems well-nigh decision making that can arise at the end of life.

CONCLUSION

The care of dying patients is fraught with challenges for patients, their loved ones, and their physicians. Clinicians must go along in mind the difficulties a patient faces in this process too as their own professional and personal obstacles to performing this work to the best of their ability. Therefore, cease-of-life care is optimized when approached every bit a thoughtful collaboration between patients, their loved ones, and their treatment teams. While many Americans remain uncomfortable with thinking about and discussing end-of-life options, armed with this knowledge, clinicians are given a remarkable opportunity to aid ease the physical and emotional suffering of patients and families confronting last illness and death.

Footnotes

Lessons Learned at the Interface of Medicine and Psychiatry

The Psychiatric Consultation Service at Massachusetts Full general Hospital (MGH) sees medical and surgical inpatients with comorbid psychiatric symptoms and weather condition. Such consultations require the integration of medical and psychiatric noesis. During their thrice-weekly rounds, Dr. Stern and other members of the Consultation Service discuss the diagnosis and direction of conditions confronted. These discussions have given ascension to rounds reports that will bear witness useful for clinicians practicing at the interface of medicine and psychiatry.

Ms. Woo is a Research Associate at Columbia University College of Physicians and Surgeons. Dr. Maytal is a Fellow in Psycho-Oncology at the Dana Farber Cancer Institute and Brigham & Women'south Infirmary and a Clinical Fellow in Psychiatry at Harvard Medical School. Dr. Stern is Master of the Psychiatric Consultation Service at MGH and a Professor of Psychiatry at Harvard Medical School.

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Source: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1764519/

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