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Introduction

As more than half of the non-hospitalized US adult population is living with at least one chronic illness, adequate healthcare is as important as ever (1). These chronic conditions include everything from arthritis to cancer to kidney disease and can be so debilitating that they may lead to or exacerbate existing anxiety and depression. Many of these individuals are not aware that they are all appropriate for holistic and palliative care. Sadly, only about 14% of those eligible for palliative care use these services worldwide (2).

Nurses should be knowledgeable about the role of palliative care and be prepared to support patients’ mental well-being while they cope with chronic conditions. Up to 77% of those experiencing long-term health afflictions may experience depressive disorders, which require special care and attention (8).

For anyone experiencing a mental health crisis or contemplating suicide, help is available around the clock in the United States. Those affected by these situations may call or text 988, the national suicide and mental health crisis hotline, or chat online at https://988lifeline.org/chat/.

What Is Palliative Care?

The word “palliative” is derived from the Latin word palliare, meaning “to cloak.” In modern medicine, this relates to the concept of alleviating (or cloaking) symptoms without necessarily curing the underlying condition.

When many people think of the term palliative care, the idea of hospice often comes to mind as well. There is a distinction between the two. Palliative care refers to the specialized treatment of a patient with chronic illness and seeks to reduce their symptom burden while supporting the patient and their family (3). Hospice, by contrast, is end-of-life care for patients who have a prognosis of about six months and are no longer receiving curative care (4,5).

Some of the key differences and similarities of hospice and palliative care are as follows (3,4,5):  

Though palliative care services are grossly underused globally, their impact is huge. For instance, timely palliative care has the following benefits (2,3):  

• Improves the quality of life for patients. 
• Reduces caregiver strain and fatigue. 
• Lowers healthcare costs in the following ways:  
  • Reduces 48% of inpatient readmissions. 
  • Decreases 35% of emergency department (ED) visits.  
  • Reduces 43% of transfers from skilled nursing facilities to acute care or ED services.

Fortunately, these services are rapidly expanding, as providers and policymakers alike recognize their vast benefits. According to the Center to Advance Palliative Care, from the years 2000 to 2016, the percentage of US hospitals with a palliative care program has tripled (3).

Case Study: Earl

You are working on a med-surg floor in a hospital, admitting a 64-year-old African American patient named Earl for COPD exacerbation. As you gather Earl’s history, you learn that he has been married for 35 years, dropped out of school in 11th grade, was a truck driver for nearly 40 years, and smoked a pack or two a day of cigarettes since he was 14. He retired three years ago and has been trying to cut back on smoking, since he developed hypertension in addition to his existing COPD, and now has four grandchildren he wants to spend more time with.

Earl’s need for oxygen has increased from 2 liters per minute to 3, and he can’t seem to catch his breath very much lately. His BMI is 41, he has type 2 diabetes mellitus, and he has been gaining weight for the past few years. Earl has a family history of heart disease and stroke, and his wife is concerned he won’t make it to see his next birthday. She is present at the bedside and states, “His father and his grandfather both died before they were Earl’s age, his dad from a heart attack and his grandfather from a stroke. I don’t want Earl to end up like that.” Earl sighs, rolls his eyes, and looks down.

Earl’s been feeling depressed lately, though has no suicidal ideations. “My wife, my kids, and my grandbabies keep me going,” he said, coughing throughout. “I just don’t have any energy and can’t be the man I want to be right now.” He reports ongoing fatigue, lack of interest in his normal hobbies, overeating, sleep problems, and an increasing fear of death. “Look, I don’t want to die… I just feel like I’m stuck, and I don’t know how to get out of this.”

Depression

Major depression is a significant mental health problem in the United States, affecting at least 10% of the adult population annually, and approximately 18% in the course of their lifetime (6,7). Depression takes an even larger toll on terminally or chronically ill patients, up to 77% of whom experience this debilitating problem (8). Worldwide, the WHO has classified major depressive disorder (MDD) as the third cause of worldwide disease of burden; it is likely to be the first cause by 2030 (10).

Definition

In 2013, the Diagnostic Statistical Manual 5th edition (DSM-5) changed the classification of depression from mood disorders to depressive disorders.

Depression now includes eight subtypes (8). The eight types of depressive disorders include:

• Disruptive mood dysregulation disorder
• Major depressive disorder (including major depressive episode)
• Persistent depressive disorder
• Premenstrual dysphoric disorder
• Substance- or medication-induced depressive disorder
• Depressive disorder due to another medical condition
• Other specified depressive disorder
• Unspecified depressive disorder

Clinical Signs and Symptoms

What all these subtypes have in common is having a sad, irritable, or empty mood, combined with related changes that significantly affect a person’s functionality (8). The differences pertain to timing, duration, and/or possible etiology. For diagnostic purposes, symptoms persist most of the day, daily, for at least two concurrent weeks (8,9). The symptom(s) should also be new or have worsened since the pre-episode status (9).

To be diagnosed with a depressive disorder, in addition to the symptoms listed above, the person should meet 5 or more of the following criteria, including either 1 and/or 2 (9):

1. Depressed mood—indicated by subjective report or observation by others (in children and adolescents, can be irritable mood).
2. Loss of interest or pleasure in almost all activities—indicated by subjective report or observation by others.
3. Significant (more than 5 percent in a month) unintentional weight loss/gain or decrease/increase in appetite (in children, failure to make expected weight gains).
4. Sleep disturbance (insomnia or hypersomnia)
5. Psychomotor changes (agitation or retardation) are severe enough to be observable by others.
6. Tiredness, fatigue, or low energy, or decreased efficiency with which routine tasks are completed. 
7. A sense of worthlessness or excessive, inappropriate, or delusional guilt (not merely self-reproach or guilt about being sick).
8. Impaired ability to think, concentrate, or make decisions—indicated by subjective report or observation by others.
9. Recurrent thoughts of death (not just fear of dying), suicidal ideation, or suicide attempts.

Additionally, some of the following features may be present (9):

• Clinically significant distress or impaired functionality in terms of occupation or social interaction
• Complete absence of manic or hypomanic episodes
• Depressive episodes are not better explained by schizophrenia spectrum or other psychotic disorders.

Epidemiology

In the United States, depression contributes significantly to morbidity, mortality, disability, and healthcare costs. According to the Centers for Disease Control and Prevention (CDC), the likely prevalence of depression is approximately 18%, with a range of 10% to 32% across the country.

The following conditions or circumstances make one more likely to experience depression in his or her lifetime (7):

• Female sex (24% compared to 13% of men)
• American Indian/Alaska Native (23%, compared to 22% of non-Hispanic White heritage, 16% of African Americans, 15% for Hawaiians, Pacific Islanders, and Latinos, and 7% for non-Hispanic Asian Americans)
• Ages 18-24 (21.5%, versus 14% of those 64 and older)
• Less than a high school education or some college (21%, compared to 15% of those with college degrees)

Etiology

Having a depressive disorder is more than just a temporary feeling of sadness. It is natural and even appropriate to feel down at times, especially when grieving the loss of a loved one. However, as discussed above, clinical depression is ongoing, with a daily or near-daily occurrence that lasts for two or more weeks and significantly affects one’s daily functioning.

Historically, depressive disorders were thought to be primarily caused by abnormalities of neurotransmitters like dopamine, serotonin, and norepinephrine. In recent years, however, the etiology of depressive disorders seems more multifaceted; they are likely caused by a combination of genetic, environmental, psychosocial, and biological components.

Furthermore, current theories posit that there is likely a secondary disturbance of neurotransmitters due to complex neural circuits and neuroregulatory systems (10). For instance, the inhibitory neurotransmitter gamma-aminobutyric acid (GABA) has been found to have an antidepressant effect in the mesolimbic and mesocortical systems (10).

Other contributors to major depressive disorders are abnormalities with thyroid and growth hormones, as well as repeated mental/emotional trauma and multiple adverse childhood experiences. High levels of stress early in life can significantly alter behavioral and neuroendocrine responses, leading to cerebral cortex structural changes that result in marked depression in later years (10).

Genetic, family, adoption, and twin studies also show a high likelihood of inherited characteristics of depression; in monozygotic twins, it is very likely that if one twin exhibits clinical depression, both will (10). Per cognitive theory, those who are susceptible to depression may have cognitive distortions that lead to depression. Finally, learned helplessness theory associates the experience of uncontrollable events with the presence of depression (10).

When examining an individual’s etiology of a depressive disorder, other factors must also be ruled out.

The differential diagnosis should include conditions such as (10):

• Adjustment disorder with depressed mood
• Anxiety disorders
• Bereavement
• Bipolar disorder
• Cyclothymia
• Dysthymia
• Eating disorders
• Schizoaffective disorder
• Schizophrenia

Additionally, labs to rule out general medical disorders can include a complete blood count (CBC), a complete metabolic panel (CMP), thyroid-stimulating hormone (TSH) level, and vitamin B-12, D, and folate levels (15).

Case Study: Earl

After Earl has gotten settled into the unit and had several breathing treatments for his COPD, you talk to him about how he manages his chronic health conditions. He says, “I take metformin for my diabetes, check my sugar a few times a week, and usually take my blood pressure pills. I forget sometimes, but my wife usually helps me remember to take them.”

Explaining to Earl that you’re also concerned about his mental health, you ask Earl to fill out the Patient Health Questionnaire-9 (PHQ-9) to screen him for depression. The PHQ-9 is a patient-administered tool scored on a scale of 0-27, with 0 being no depression and 27 representing severe depression (11,12). It has 9 items that check for the frequency of the following experiences, with 0 being no days and 3 being nearly every day (11-12):

1. Anhedonia (lack of interest or pleasure in activities)
2. Depression or hopelessness
3. Sleep troubles (falling/staying asleep, sleeping too much)
4. Fatigue (having little energy, feeling tired)
5. Appetite problems (overeating or anorexia)
6. Negative self-feelings (feeling like a failure or let-down to loved ones)
7. Concentration difficulties
8. Motor problems (moving/speaking too quickly or slowly)
9. Self-harm thoughts (harming oneself or being better off dead)

The sum of Earl’s responses is 22, which puts him into the category of severe depression (12). At this point, you ask Earl if he’s ever sought help with mental health problems before. He balks, saying, “Hey, I had no time to worry about that kind of stuff. I had a demanding job and a big family. What would they have done anyway? Just come and talk to me?”

His score of 22 on the PHQ-9 alerts you to the fact that he will likely need further care and evaluation from mental health professionals. Other inpatient depression screening tools appropriate for palliative care patients include the Beck Depression Inventory, the Geriatric Depression Scale, and the Hamilton Depression Scale (13). Earl will likely have to be further evaluated to receive more specific care; this should include palliative care, as Earl has several chronic illnesses.

You explain that there are many resources available to him and that you’ll request a palliative care consult for him. His face goes pale, and he says, “Wait a minute… Palliative care? Does that mean I’m dying? Why didn’t anyone tell me?”

You calmly inform Earl of the nature of palliative care, informing him that other members of the healthcare team will meet with him. You tell him he may meet with social workers, palliative care practitioners, clergy members, volunteers, therapists, and so forth.

Treatment

Nowadays, there are fortunately myriad treatments for major depressive disorders, any of which can often be used in the setting of palliative care. Generally, treatments fall into these modalities: psychotherapeutic, pharmacological, interventional, and lifestyle modification (10). Most commonly, practitioners start with medications and/or psychotherapy; combination treatment with both of these methods is more effective than either one alone (10). Other FDA-approved treatments that have proven effective for major depressive disorder (MDD) include electroconvulsive therapy (ECT), transcranial magnetic stimulation (TMS), and vagus nerve stimulation (VNS) (10, 15).

Pharmacological Treatment Modalities

It should be noted that the initiation of any antidepressant medication can lead to increased thoughts of suicide or self-harm. Clinicians should always warn patients and their family to closely monitor this in the first two weeks of treatment (10, 16).

For many decades, there have been plenty of FDA-approved medications for various forms of depression.

The most commonly used today are those in the following classes (10, 16):

• Selective serotonin reuptake inhibitors (SSRIs): Very widely prescribed, these are usually the first line of pharmacological treatment for depression. Some examples are citalopram, escitalopram, fluoxetine, fluvoxamine, paroxetine, and sertraline.
• Serotonin-norepinephrine reuptake inhibitors (SNRIs): As their name suggests, these affect two neurotransmitters and are frequently used for patients with depression and pain disorders. They include desvenlafaxine, duloxetine, levomilnacipran, milnacipran, and venlafaxine.
• Serotonin modulators (5-HT2 blockers): If a patient does not respond to or tolerate SSRIs or SNRIs, serotonin modulators are another option. Unlike SSRIs and SNRIs, they tend to work better for depression only, as there is no evidence that they have any effect on anxiety (14). Serotonin modulators include trazodone, vilazodone, and vortioxetine.
• Atypical antidepressants are often used either to augment or replace SSRIs or SNRIs in patients who develop sexual side effects as a result of their medications. This class includes bupropion and mirtazapine.
• Other medications may be used as adjuvant therapy to enhance the antidepressant effects of the primarily prescribed drug. These include mood stabilizers, antipsychotics, psychostimulants, and subanesthetic levels of ketamine or esketamine (16).
• Older classes of antidepressants include tricyclic antidepressants (TCAs) like amitriptyline and doxepin, and monoamine oxidase inhibitors (MAOIs) like phenelzine and isocarboxazid. These classes are not commonly used anymore due to their high side-effect profile, potential for overdose, and interference with other medications (10).

Psychotherapy Treatment Modalities

While some patients may prefer medical management of their depression, others may choose to use therapy in place of, or together with, a medication. Some types of therapy effective for depressive disorders include (10, 15).

• Cognitive Behavioral Therapy
• Interpersonal Therapy
• Support Groups

For palliative care patients, a list of appropriate support groups and other resources will be listed at the end of this course.

Brain Stimulation Therapies

As mental health services gain more funding and attention, other treatment modalities have been emerging. They may be used for depression refractory to other efforts, or in conjunction with therapy and medication.

Some FDA-approved treatments include the following (10, 15, 16, 17, 18, 19):

• Electroconvulsive therapy (ECT): The most effective for treatment-resistant severe major depressive disorder, ECT is also used for conditions such as catatonia, severe psychosis, and acute suicidality. Under anesthesia, the patient receives brief electrical stimulation to the brain, which induces temporary seizures. ECT treatments are typically done 2-3 times a week, and patients usually receive anywhere from six to twelve treatments.
• Transcranial Magnetic Stimulation (TMS): This is for patients who have not had success with at least one antidepressant medication. TMS uses a magnet, instead of electricity, to stimulate specific areas of the brain. No anesthesia is required, and seizures from this procedure are rare.
• Vagus Nerve Stimulation (VNS): VNS is a long-term adjunctive treatment for patients who have failed at least 4 medication trials. It involves either an implanted or a transcutaneous pulse generator that intermittently stimulates the vagus nerve. This type of treatment often takes 3-6 months to be effective.

Nursing Interventions

Though depressive disorders can be incredibly debilitating to patients and upsetting to their loved ones, nurses can provide a great amount of support. When considering the patient who has depression in the setting of a chronic or life-threatening condition, many nursing interventions may provide comfort and relief.

The nurse should first consider her goals when interacting with her patient. If the goal is merely to provide required care, the effectiveness of nursing interventions may not be as salient to the patient. However, if the nurse’s goal is to help the patient cope and adapt to the situation, then much can be done.

Several techniques clinicians can use to offer emotional support to palliative care patients include but are not limited to therapeutic communication, teaching coping skills, providing access to music, art, and pet therapy, occupational or physical therapy, social work referrals, and community resources for the patient and his family.

Therapeutic Communication

One of the easiest and most effective tools a nurse has is therapeutic communication. This can be defined as verbal and non-verbal communication between a patient and medical provider, to help the patient overcome emotional or psychological stress (20). Oftentimes, having a clinician simply sit and quietly offer his or her presence can provide immense comfort to a patient.

Other ways nurses can engage in effective therapeutic communication are as follows (21):

• Addressing the patient by name
• Beginning the dialogue with open-ended questions to allow more comfortable conversations before necessary close-ended questions are asked
• Using therapeutic silence to allow the patient and nurse to reflect on what has been said
• Actively listening to the patient by doing the following:
  • Using nonverbal cues like head nodding or leaning in
  • Using verbal cues, such as saying, “Uh huh,” or “Go on” to encourage a patient to speak
  • Reflecting on what a patient has said by sometimes repeating back the same words to demonstrate that he was heard
  • Asking follow-up questions about something the patient has said

While there are many methods and varieties of therapeutic communication, it is important to keep potential pitfalls in mind, too. These are some ways effective communication can inadvertently be impeded:

• Using negative nonverbal language, such as crossing arms across the chest or appearing distracted
• Providing false reassurances, which can lead to mistrust if the desired outcome of a situation does not happen
• Using value judgments or approving/disapproving responses, which can be perceived as intrusive or unwanted
• Changing the subject abruptly can cause the patient to feel dismissed, or like what she was saying didn’t matter

Teaching Coping Mechanisms

When assisting a patient with depression who is also receiving palliative care, it is often helpful to assess how the patient copes with her situation. From there, effective coping mechanisms can be taught or reinforced by the nurse and other members of the palliative care team.

When working with palliative care, four general aspects of care are usually addressed: social, psychological, physical, and spiritual (22).

A 2020 study reviewed positive coping mechanisms for each domain, along with ways the patient can be supported (23):

• Behavioral (Social)
  • Behavioral activation
    • Find out what is important to the patient and help him align behaviors to suit values
    • Help the patient remain engaged in meaningful activities as much as possible
  • Problem-solving
    • List problems, brainstorm solutions, and develop an action plan
    • This may include estate planning, researching clinical trial options or alternative treatments, and resolving family dilemmas
  • Soliciting social support
    • Identify what the patient needs from staff, family, friends, and the community
    • Help facilitate these social interactions
• Cognitive (Psychological)
  • Cognitive restructuring
    • Recognize maladaptive or irrational beliefs the patient has and refute them
    • For example, the patient may think that because a particular disease only has a 5% 5-year survival rate, he is going to die within 5 years and might as well give up now. Help reframe the situation and focus on what the patient can control.
  • Mindfulness
    • Focus on being present in the moment as much as possible
    • Practice meditation (guided or individual) and perhaps gentle yoga or stretching
  • Self-distraction
    • Assist the patient in shifting from a state of worry to a busier state
    • For instance, encourage the patient to engage in work (if still working), reading, puzzles, games, or other enjoyable activities
• Emotional/physiologic (Physical)
  • Flow
    • Help the patient become fully immersed in an activity that provides enjoyment and can assist with focus and energy levels
    • This can include more in-depth creative activities like writing a memoir or poetry, painting, playing an instrument, or engaging in other hobbies
  • Physiologic interventions
    • Assist the patient in improving physical health
    • Facilitate opportunities to exercise, breathe deeply, relax, and engage in good sleep hygiene
  • Positive psychology interventions
    • Increase the patient’s positive emotions (humor, gratitude, optimism, etc.)
    • Exchange jokes or watch a comedian, talk about happy future plans, express gratitude to others
• Existential / Spiritual
  • Acceptance
    • As much as possible, help the patient accept the situation without necessarily trying to change the inevitable outcome
    • Talk with family and friends about the reality of the disease and realistic goals for the future
  • Life review
    • Allow the patient to take time to conduct an inventory of her life, thinking about the legacy she wishes to leave behind
    • Assist the patient in making amends as needed, creating letters or videos to leave with loved ones, and completing meaningful tasks
  • Meaning making
    • Identify with the patient any new meaning the current situation has added to his life
    • Help the patient establish new priorities and/or goals, and to see any positive aspects of the disease process.
  • Religion or spirituality
    • Build community through faith or helping others
    • If applicable, have the patient pray or meet with others of the same faith

Complementary Therapies

• Nowadays, there are many types of therapy available to patients across the country. While in-hospital (whether inpatient or outpatient), the following therapies may be helpful to those receiving palliative care:
• Physical
• Occupational
• Pet/ animal-assisted
• Art
• Music
• Dance
• Counseling

Finally, nurses can advocate for other aspects of the patient’s well-being, no matter where he or she is in the disease process. The nurse should promote as much patient autonomy as reasonably possible and help coordinate symptom control with the primary and palliative care team (22).

Patient Education

As with all good nursing care, patient education is a key component. In the case of clinical depression in the setting of palliative care, the nurse should start by assessing their own experience with depression and similar feelings. Then the nurse should consider what coping mechanisms (positive or negative) they use to deal with these emotions. Finally, an internal check for bias and preconceived notions should be done to ensure that the nurse doesn’t project their values on the patient when offering support, guidance, and teaching.

When it comes to addressing depression, here are some key topics to address with the palliative care patient and her family (24):

• How to identify the signs and symptoms of depression (see “Clinical Signs and Symptoms” above).
• Reiterate to the patient that depressive disorders are medical conditions with effective treatments; this can help minimize the patient’s feeling stigmatized.
• Describe the side effects of medications, how most mood-stabilizing drugs may take a week or two to take full effect, and how several regimens may need to be trialed before an effective one is found.
  • Explain the rationale for the medication(s) prescribed.
  • Remind the patient to tell prescribers all other medications, supplements, and vitamins used, as these can affect the efficacy of mood-stabilizing drugs.
• Reinforce the importance of honesty in therapy, so that issues may be appropriately addressed.
• If using a mindfulness approach, consider using the teach-back method to help prevent the patient’s negative thoughts/rumination.
• Have the patient identify ways he can maintain physical health to improve mental health (e.g., eating well, using good sleep hygiene, exercising regularly, etc.).
• Remind the patient that the use of central nervous system depressants like alcohol or opioids may increase her depressive symptoms.

Resources and Support

For patients nationwide, there is a robust support network available for myriad conditions. Almost all hospitals in the United States have social workers on site, and larger hospitals may have paid or volunteer clergy, counselors, therapists, and a full palliative care team. For patients who are interested in receiving palliative care, a great starting point is their primary care provider. Another avenue would be talking with the nursing and medical teams during an inpatient stay, to see what services are available.

For depression and mental health concerns, the following online and phone resources are available:

• As stated at the beginning of this course, help is available 24/7 for those experiencing mental health crises and/or suicidal ideation. In the United States, the phone number to call or text is 988, and the website to chat is https://988lifeline.org/chat/.
• NAMI, the National Alliance on Mental Illness: https://nami.org/Home
• Get Palliative Care has resources for family members of those receiving (or who want to receive) palliative care: https://getpalliativecare.org/handouts-for-patients-and-families/
• Prepare for Your Care offers resources for those trying to get their affairs in order, and has fillable forms for each US state: https://prepareforyourcare.org/en/welcome
• Caring Info offers information for patient and caregiver alike on a vast array of topics: https://www.caringinfo.org/
• The National Cancer Institute page gives oncology patients information on how to talk to loved ones, cope with feelings, make necessary future plans, and more: https://www.cancer.gov/about-cancer/advanced-cancer/feelings
• The National Institute of Mental Health provides a large variety of resources: https://www.nimh.nih.gov/
• The National Network of Depression Centers includes connections to immediate services for those experiencing a mental health crisis, as well as general facts about various mental health problems: https://nndc.org/resource-links/
• SAMHSA is the Substance Abuse and Mental Health Services Administration, with a wealth of information on all things involved with mental health: https://www.samhsa.gov/

Conclusion

Approximately 20% of the US population – that is, every one in five people – lives with depression at some point in their lives. Roughly half of Americans live with a chronic health problem, and are thus eligible for palliative care; however, only a fraction seeks out and receive these services (2). The differences between hospice and palliative care are not always well understood by the public, so the nurse should be prepared to explain the unique and intersecting roles of each service. As many as 77% of people with chronic illnesses will experience depressive disorders, (6, 7, 8). Nurses should thus also be aware of the high instances of intersection between depression and illness.

When working with a patient who has depression and is also receiving palliative care, the nurse must be familiar with treatment modalities, the members of the palliative care team, and therapeutic communication. While the patient is still admitted to a hospital, the bedside nurse should advocate for palliative care services as appropriate. It would also be helpful to identify local resources appropriate for the patient, so they have the best continuity of care upon discharge.

Overall, nurses should be aware of the unique needs of individuals who have chronic mental and physical health problems. If a patient is receiving palliative care services, a depression screening would prove useful to provide further care to better the patient’s quality of life. When the patient is discharged from the hospital, it would be helpful for the nurse to involve the family and the patient with planning and available resources.

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