An innovative care approach to full code hospice patients

Author(s):Christine Alexandra Bottone, BSN, RN

What may seem like a contradiction to you may be a comfort to patients.

Takeaways:

  • Hospice is not synonymous with “do not resuscitate.”
  • Despite potential contradictions to full code and hospice, you can promote comfort using nursing strategies.
  • The goal of patient teaching in hospice is to help the patient achieve self-transcendence.

Rose Morgan*, your hospice patient, is no longer breathing and she has no pulse. What do you do? You don’t consider code status because her chart contains words like “terminal illness,” “comfort measures,” and “end-of-life care.” You assume Ms. Morgan is a DNR (do not resuscitate). But you’re wrong. She’s a full code and your lack of action violates her end-of-life wishes.

Many nurses don’t know that hospices admit full code patients. And although electing full code may seem like a contradiction, a 2018 study by Ankuda and colleagues found that about 12.9% of hospice patients do. Nursing care strategies should respect code status and comfort measures and focus on building trusting relationships with patients and families to ensure they’re making informed code choices.
*Name is fictitious.

Rely on patient assessments

As nurses, we learn to anticipate our patients’ needs to provide high-quality and time-efficient care. However, when we over-anticipate and draw conclusions without conducting a proper assessment, we’re prone to make errors and may be perceived as incompetent.

Think about it this way: Have you ever requested a chest x-ray from the on-call provider before listening to lung sounds? Probably not. So why would you make a decision about calling (or not calling) a code without first knowing what the patient wants? Rely on your comprehensive patient assessment, which should inform the rest of the nursing process (diagnosis, plan, intervention [action], and evaluation).

Care plan strategies

Advocating for the patient, promoting his or her comfort, and fostering a therapeutic relationship are important hospice nursing goals. These strategies can help you achieve them.

  • Prioritize your care based on patient needs and wishes and incorporate the hospice mission statement. Each organization has its own mission statement, but all emphasize comfort over cure.
  • Don’t compare patients in hospice with other patients, and don’t provide care based on your experience with patients who had similar diagnoses.
  • Listen 75% of the time and talk 25%. When in doubt, listen more.
  • Avoid close-ended questions (Are you comfortable? Do you have pain?) Instead, ask open-ended questions to elicit elaboration (What can I do to make you more comfortable? How can I help you?)
  • Accept silence. Sometimes silence is a sign of emotional distance, but it also can signify comfort.
  • Respect the intimacy of the family’s presence and give them privacy when possible.

 Patient and family education

Educating patients and families in the hospice setting requires that you’re aware of your own attitudes and that you respect patient autonomy.

Recognize and reflect on personal attitudes. Before you begin teaching, take time to consider your personal attitudes. Perform a self-assessment and ask yourself: Do I think full code status is a failing hospice policy or a patient’s right? If I were a hospice patient, what would I choose? How do I know it’s the right choice for me.

Return to this step throughout the education process and before proceeding to subsequent steps. Attitudes change over time, making reassessment essential for effective teaching. Also, take time to reflect at the end of each day or week.

Educate yourself. Learn about caring for patients in hospice who have chosen full code. (See Hospice FAQs.) A good resource is the hospice nurse. Also, educate yourself about the patient’s choice. What we believe is best may not be what the patient believes. For example, a patient may believe that the physical damage sustained during lifesaving procedures is preferable to mentally accepting death. In this case, a full code may be more consistent with comfort measures than a DNR. Remember, comfort measures are determined by the patient.

Hospice FAQs
If you’re new to hospice care, you probably have some questions. Here are some answers, but also seek out hospice nurses for their expert guidance.

How should I prepare for physical changes indicative of a code? Assess for airway, breathing, and circulation changes. Prepare for a potential code the same way you would for patients not on hospice.

What should I know about hospitalization and does this change eligibility for Medicare coverage? According to a 2016 study by Wang and colleagues, approximately one in 20 hospice patients is hospitalized to receive intensive treatment. This includes invasive procedures, such as inpatient surgeries and blood transfusions. Hospitalization changes patient coverage under Medicare hospice benefits.

During patient education, explain that while hospice patients are hospitalized, they are automatically disenrolled from hospice services. However, upon discharge, they can immediately re-enroll.

What should I know when caring for a potential hospice patient? Inform potential hospice patients and families that full code and hospice, while uncommon, are compatible. This fact can be the tipping point for enrollment.

What should I know about the full code hospice patient with a dementia diagnosis? According to the 2018 study by Ankuda and colleagues, dementia and/or failure to thrive hospice indicators are second only to cancer indicators, and they represent 18.4% of full code hospice patients.

Remember that patients with moderate dementia can accurately communicate needs, so power of attorney (an appointed representative authorized to make decisions on the patient’s behalf) desires don’t supersede the patient’s if they’re clearly expressed.

Does full code go against comfort measures? This question is best answered on an individual basis. You’ll find patients, families, and coworkers in all clinical areas who don’t believe it does. In the end, though, code status is a personal decision, and it should remain that way.

Respect patient autonomy. Respect is integral to nursing, and promoting patient autonomy respects choice. Your attitude may contrast with others’, but avoid identifying any attitude as wrong. Realize that attitudes differ, particularly for controversial topics, and recognize that respect for patient autonomy may not come easily when caring for full code hospice patients.

Establish a trusting patient-caregiver relationship. Build a strong relationship early and uncover patient needs that can’t be discerned in the physical assessment. Develop trust by forming organic connections and, if possible, cultivate rapport both with and without the family present. Humor is an excellent tool for establishing a bond, so laugh frequently with your patients and their families.

Don’t discuss death until a trusting relationship is formed. Instead, work to understand the patient’s thought processes. If he or she chose a full code, find out why and respect the decision.

Prompt discussion of current knowledge. Once trust is established, begin having open discussions. Explain what’s involved in a full code, assess the patient’s knowledge of cardiopulmonary resuscitation (CPR), and clarify any misconceptions. Elaborate on other treatment options available in code orders. For example, many patients don’t know that oxygen, IV treatment, and oral antibiotics may still be given when specified in code orders.

Also discuss the purpose of hospice and how it’s different from palliative care. Hospice is a specific team-based approach to care, functioning within a larger palliative care umbrella. Palliative care denotes a shift from disease-directed care to symptom management, while hospice is a service provided for those who are dying. And although Medicare hospice benefits determine eligibility, the major requirement for hospice enrollment is a predicted timeline of less than 6 month before death.

Encourage open patient and family communication. This is the step most likely to lead to code status change. The patient is the expert on his or her needs and goals, but code orders frequently are a collaborative decision between the patient and family. Create situations for communication between the patient and family. For example, facilitate discussion and engagement from both the patient and family when providing education.

Understand family influences by performing a family assessment. Influence can be positive or negative. For example, sometimes families unknowingly take away patient control. Although family requests are important, remember that we’re patient advocates first.

Provision 3 of the American Nurses Association Code of Ethics for Nurses with Interpretive Statements reads: “The nurse promotes, advocates for, and protects the rights, health, and safety of the patient.” Advocacy requires constant inquiry into patient needs. What are his or her hopes and fears? How do they differ from family priorities?

Some patients, even when they understand the reality of CPR, will maintain full code. Don’t try to persuade them or their families to change their code choice; that isn’t your job. After adequate teaching, comfort is defined by the individual.

Help the patient achieve self-transcendence. You probably remember Maslow’s hierarchy of needs (physiological, safety, love and belonging, self-esteem, and self-actualization) and that achieving each level depends on achieving the ones before it (love and belonging can’t be achieved without first fulfilling physiologic and safety needs). What you may not remember is the stage that comes after self-actualization: self-transcendence.

As nurses, we help all patients move up the hierarchy, but self-transcendence goes hand-in-hand with empowerment, the primary purpose of teaching. Throughout each of the steps discussed above, patient and family teaching empowers the patient to make a code choice. After the last step (encourage open communication between patient and family), you can help the patient transcend the notion of life and death by focusing on experiences he or she is proud of. These experiences frequently had an impact on others as well; an impact that continues after the patient dies. Imagine a patient who was a teacher and recalls with joy teaching young children to read and write. You can point out that those children continued through school and graduated because the patient helped them.

Self-transcendence teaches full code hospice patients to perceive life through their positive impact on others, and that no impact is too small. Ultimately, this step empowers the patient to let go of fear and self-doubt as he or she approaches the end of life.

Accepting contradiction

Remember, end-of-life care should focus on comfort. What you may perceive as a contradiction to hospice (full code), may actually be a comfort to the patient. However, you can provide education and opportunities for discussion that may help the patient and family make a different choice. In the end, though, the final decision belongs to the patient.

 

Christine Alexandra Bottone is an RN supervisor at Autumn Lake Healthcare in New Britain, Connecticut, and a graduate student enrolled in the University of Connecticut’s adult gerontology primary care nurse practitioner program.

 

Selected references

American Nurses Association. Code of Ethics for Nurses with Interpretive Statements. Silver Spring, MD: American Nurses Association; 2015.

Ankuda CK, Fonger E, O’Neil T. Electing full code in hospice: Patient characteristics and live discharge rates. J Palliat Med. 2018;21(3):297-301.

Maslow AH. A theory of human motivation. Psychol Rev. 1943;50(4):370-96.

Maslow AH. The Farther Reaches of Human Nature. New York, NY: Viking Press; 1973.

National Hospice and Palliative Care Organization. NHPCO Facts and Figures: Hospice Care in America. Rev. ed. July 2019. nhpco.org/wp-content/uploads/2019/07/2018_NHPCO_Facts_Figures.pdf

Wang SY, Aldridge,MD, Gross CP, et al. Transitions between healthcare settings of hospice enrollees at the end of life. J Am Geriatr Soc. 2016;64(2):314-22.

 

4 COMMENTS

  1. Dear Dr. Long,

    Thank you for taking the time to read my article. Yes, the article encompasses elements of palliative care because hospice falls under the palliative care umbrella (see sub-heading “Prompt Discussion of Current Knowledge”). In other words, not all palliative care is hospice, but hospice is palliative care. For more information please see https://hospicefoundation.org/Hospice-Care/Palliative-Care-Defined.
    The article focuses on full code status in hospice patients (“unraveling a paradox” if you will) because hospice patients face a terminal prognosis. Full code hospice patients are a unique patient population with nursing needs very different than the more general palliative care population. The primary nursing need of full code hospice patients is to be understood. I have experienced nurses voicing criticism to peers, even claiming these patients to be abusing hospice benefits. I wrote the article with the hope of providing some understanding of why these patients might choose full code— so that we as nurses can provide the best care possible.
    Best,
    Christine Alexandra Bottone, BSN, RN

  2. Good point Dr. Long. All hospice care is palliative in nature, but not all palliative care is hospice.

    Thank you Ms. Bottone for writing this excellent and much-needed article. When I worked in hospice we would occasionally have a hospice patient who was hospitalized for an acute condition not related to their hospice diagnosis (appendicitis comes to mind). Sometimes it was hard for the hospital staff to understand the patient has the right under the Patient Self Determination Act to remain a full code. Sometimes a person just isn’t ready. Sometimes their beliefs are such that miracles can and do happen and remaining a full code is an important element of hope – even when they know intellectually that CPR is not often effective in persons with advanced serious illness.

  3. To me, what you have just described is palliative care, not hospice. According to CAPC the definition of palliative care is “specialized healthcare for people living with a serious illness. This type of care is focused on providing relief from the symptoms and stress of the illness. The goal is to improve the quality of life for both the patient and the family. Provided by a specially-trained team, palliative care specialists work together with a patient’s other doctors to provide an extra layer of support. Palliative care is based on the needs of the patient, not on the patient’s prognosis. It is appropriate at any age and at point in a serious illness and can be delivered with curative treatment.” https://www.capc.org/about/palliative-care/

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