Caring for a loved one at the end of their life can be a challenging and emotional experience. However, with the right nursing care plan in place, it can also be a time of peace, comfort, and dignity. In this article, we’ll explore the essential components of end-of-life care, including hospice care and nursing care plans.
End-of-life care is a specialized form of care that is provided to individuals who are near the end of their lives. This care is designed to manage physical, emotional, and spiritual symptoms and to improve the quality of life for both the patient and their loved ones. End of life care can be provided in a variety of settings, including at home, in a hospital, or in a hospice.
Nursing care involves the support of the general well-being of our patients, the provision of episodic acute care and rehabilitation, and when a return to health is not possible a peaceful death. Dying is a profound transition for the individual. As healthcare providers, we become skilled in nursing and medical science, but the care of the dying person encompasses much more. Certain aspects of this care are taking on more importance for patients, families, and healthcare providers.
Hospice care provides comprehensive physical, psychological, social, and spiritual care for terminally ill patients. Most hospice programs serve terminally ill patients from the comforts and relaxed surroundings of their own homes, although there are some located in inpatient settings. The goal of the hospice care team is to help the patient achieve as full life as possible, with minimal pain, discomfort, and restriction. It also emphasizes a coordinated team effort to help the patient and family members overcome the severe anxiety, fear, and depression that occur with a terminal illness. To that end, hospice staffs encourage family members to help and participate in patient care, thereby providing the patient with warmth and security and helping the family caregivers begin the grieving process even before the patient dies.
Everyone involved in this method of care must be committed to high-quality patient care, unafraid of emotional involvement, and comfortable with personal feelings about death and dying. Good hospice care also requires open communication among team members, not just for evaluating patient care but also for helping the staff cope with their own feelings.
Recent studies have identified barriers to end-of-life care including patient or family member’s avoidance of death, the influence of managed care on end-of-life care, and lack of continuity of care across settings. In addition, if the dying patient requires a lengthy period of care or complicated physical care, there is the likelihood of caregiver fatigue (psychological and physical) that can compromise the care provided.
The best opportunity for quality care occurs when patients facing death, and their families, have time to consider the meaning of their lives, make plans, and shape the course of their living while preparing for death.
During end-of-life care, nursing care planning revolves around controlling pain, preventing or managing complications, maintaining the quality of life as possible, and planning in place to meet the patient’s and/or family’s last wishes.
The following are the nursing priorities for patients in hospice care:
Assess for the following subjective and objective data:
Following a thorough assessment, a nursing diagnosis is formulated to specifically address the challenges associated with hospice care based on the nurse’s clinical judgement and understanding of the patient’s unique health condition. While nursing diagnoses serve as a framework for organizing care, their usefulness may vary in different clinical situations. In real-life clinical settings, it is important to note that the use of specific nursing diagnostic labels may not be as prominent or commonly utilized as other components of the care plan. It is ultimately the nurse’s clinical expertise and judgment that shape the care plan to meet the unique needs of each patient, prioritizing their health concerns and priorities.
Goals and expected outcomes may include:
Therapeutic interventions and nursing actions for patients in hospice care may include:
Family coping for patients in hospice care involves a range of emotional, psychological, and practical responses. Families may experience anticipatory grief, stress, and a need for support as they navigate the impending loss of their loved one. They may engage in various coping strategies, such as seeking emotional support from healthcare providers, connecting with support groups, or utilizing spiritual or cultural resources to find comfort and meaning during this challenging time.
Assess the level of anxiety present in the family and/or SO.
Anxiety level needs to be dealt with before problem-solving can begin. Individuals may be so preoccupied with the client’s own reactions to situations that they are unable to respond to another’s needs.
Determine the level of impairment of perceptual, cognitive, and/or physical abilities. Evaluate illness and current behaviors that are interfering with the care of the patient.
Information about family problems will be helpful in determining options and developing an appropriate plan of care.
Note the patient’s emotional and behavioral responses resulting from increasing weakness and dependency
Approaching death is most stressful when patient and/or family coping responses are strained, resulting in increased frustration, guilt, and anguish.
Determine current knowledge and/or perception of the situation.
Provides information on which to begin planning care and make informed decisions.
Assess the current actions of SO and how they are received by the patient.
Lack of information or unrealistic perceptions can interfere with the caregiver’s and/or care receiver’s response to the illness situation.
Establish rapport and acknowledge the difficulty of the situation for the family.
May assist SO to accept what is happening and be willing to share problems with staff.
Discuss underlying reasons for patient behaviors with family.
When family members know why the patient is behaving differently, it may help them understand and accept or deal with unusual behaviors.
Assist family and patient to understand “who owns the problem” and who is responsible for resolution. Avoid placing blame or guilt.
When these boundaries are defined, each individual can begin to take care of own self and stop taking care of others in inappropriate ways.
Involve SO in information giving, problem-solving, and care of patients as feasible. Instruct in medication administration techniques, and needed treatments, and ascertain adeptness with the required equipment.
Significant others (SO) may be trying to be helpful, but actions are not perceived as being helpful by the patient. In addition, may be withdrawn or can be too protective.
Include all family members as appropriate in discussions. Provide and/or reinforce information about terminal illness and/or death and future family needs.
Information can reduce feelings of helplessness and uselessness. Helping a patient or family find comfort is often more important than adhering to strict routines. However, family caregivers need to feel confident with specific care activities and equipment.
Tolerance to activity in patients in hospice care may vary based on their individual condition and prognosis. Some patients may have reduced physical stamina and may experience fatigue or shortness of breath even with minimal activity. It is important to assess their activity tolerance regularly, adjust activity levels accordingly, and provide support and assistance to help them maintain their desired level of activity while managing their symptoms and ensuring their comfort and safety.
Assess sleep patterns and note changes in thought processes and behaviors.
Multiple factors can aggravate fatigue, including sleep deprivation, emotional distress, side effects of medication, and the progression of the disease process.
Document cardiopulmonary response to activity (weakness, fatigue, dyspnea, arrhythmias, and diaphoresis).
Can provide guidelines for participation in activities.
Monitor breath sounds. Note feelings of panic or air hunger.
Hypoxemia increases the sense of fatigue and impairs the ability to function.
Recommend scheduling activities for periods when the patient has the most energy. Adjust activities as necessary, reducing intensity level and/or discontinuing activities as indicated.
Prevents overexertion, and allows for some activity within the patient’s ability.
Encourage the patient to do whatever is possible: self-care, sitting in a chair, and visiting with family or friends.
Provides a sense of control and a feeling of accomplishment.
Instruct patient, family, and/or caregiver in energy conservation techniques. Stress the necessity of allowing for frequent rest periods following activities.
Enhances performance while conserving limited energy, preventing an increase in the level of fatigue.
Demonstrate the proper performance of ADLs, ambulation, or position changes. Identify safety issues: use of assistive devices, the temperature of bath water, keeping travel ways clear of furniture.
Protects patient or caregiver from injury during activities.
Encourage nutritional intake and use of supplements as appropriate.
Necessary to meet energy needs for activity.
Provide supplemental oxygen as indicated and monitor response.
Increases oxygenation. Evaluates the effectiveness of therapy.
The process of grieving for patients in hospice care is a natural and individual experience that can vary in duration and intensity. It involves emotional, physical, and spiritual aspects as patients and their loved ones come to terms with the impending loss. Providing compassionate support, facilitating open communication, and offering resources for emotional and spiritual guidance can help patients and their families navigate the grieving process during this sensitive time.
Assess the patient and/or SO for the stage of grief currently being experienced. Explain the process as appropriate.
Knowledge about the grieving process reinforces the normality of feelings and/or reactions being experienced and can help patients deal more effectively with them.
Monitor for signs of debilitating depression, statements of hopelessness, and desire to “end it now.” Ask the patient direct questions about the state of mind.
The patient may feel vulnerable when recently diagnosed with an end-stage disease process and/or when discharged from the hospital. Fear of loss of control and/or concerns about managing pain effectively may cause the patient to consider suicide.
Investigate evidence of conflict; expressions of anger; and statements of despair, guilt, hopelessness, and inability to grieve.
Interpersonal conflicts and/or angry behavior may be the patient’s or SO’s way of expressing or dealing with feelings of despair and/or spiritual distress, necessitating further evaluation and support.
Determine the way that the patient and/or SO understand and respond to death. Determine cultural expectations, learned behaviors, experience with death (close family members and/or friends), beliefs about life after death, and faith in Higher Power (God).
These factors affect how each individual faces death and influences how they may respond and interact.
Provide an open, nonjudgmental environment. Use therapeutic communication skills of active listening, affirmation, and so on.
Promotes and encourages realistic dialogue about feelings and concerns.
Encourage verbalization of thoughts and/or concerns and accept expressions of sadness, anger, and rejection. Acknowledge the normality of these feelings.
Patients may feel supported in the expression of feelings by the understanding that deep and often conflicting emotions are normal and experienced by others in this difficult situation.
Facilitate the development of a trusting relationship with the patient and/or family.
Trust is necessary before the patient and/or family can feel free to open personal lines of communication with the hospice team and address sensitive issues.
Be aware of mood swings, hostility, and other acting-out behavior. Set limits on inappropriate behavior, and redirect negative thinking.
Indicators of ineffective coping and need for additional interventions. Preventing destructive actions enables patients to maintain control and a sense of self-esteem.
Reinforce teaching regarding disease processes and treatments and provide information as requested or appropriate about dying. Be honest; do not give false hope while providing emotional support.
Patient and/or SO benefit from factual information. Individuals may ask direct questions about death, and honest answers promote trust and provide reassurance that correct information will be given.
Review past life experiences, role changes, sexuality concerns, and coping skills. Promote an environment conducive to talking about things that interest the patient.
Opportunity to identify skills that may help individuals cope with the grief of current situation more effectively. Issues of sexuality remain important at this stage: feelings of masculinity or femininity, giving up a role within the family, and the ability to maintain sexual activity (if desired).
Assist patient/SO to identify strengths in self or situation and support systems.
Recognizing these resources provides an opportunity to work through feelings of grief.
Be aware of the client’s feelings about death. Accept whatever methods patients/SO has chosen to help each other through the process.
The caregiver’s anxiety and unwillingness to accept the reality of the possibility of the client’s death may block the ability to be helpful to the patient/SO, necessitating enlisting the aid of others to provide needed support.
Provide an open environment for discussion with patient/SO (when appropriate) about desires and/or plans pertaining to death; e.g., making a will, burial arrangements, tissue donation, death benefits, insurance, time for family gatherings, and how to spend the remaining time.
If patients/SO are mutually aware of impending death, they may more easily deal with unfinished business or desired activities. Having a part in problem-solving or planning can provide a sense of control over anticipated events.
Encourage participation in care and treatment decisions.
Allows patients to retain some control over life.
Visit frequently and provide physical contact as appropriate or desired, or provide frequent phone support as appropriate for the setting. Arrange for a care provider and/or support person to stay with the patient as needed.
Helps reduce feelings of isolation and abandonment.
Provide time for acceptance, final farewell, and arrangements for memorial or funeral service according to individual spiritual, cultural, and ethnic needs.
Accommodation of personal and family wishes helps reduce anxiety and may promote a sense of peace.
Identify the need for appropriate timing of antidepressants and/or anxiety medications.
May alleviate distress, and enhance coping, especially for patients not requiring analgesics.
Determine spiritual needs or conflicts and refer to appropriate team members including clergy and/or spiritual advisor.
Providing for spiritual needs, forgiveness, prayer, devotional materials, or sacraments as requested can relieve spiritual pain and provide a sense of peace.
Refer to an appropriate counselor as needed (psychiatric clinical nurse specialist, social worker, psychologist, pastoral support)
Compassion and support can help alleviate distress or palliate feelings of grief to facilitate coping and foster growth.
Refer to visiting nurse, home health agency as needed, or hospice team, when appropriate.
Provides support in meeting the physical and emotional needs of the patient and/or SO, and can supplement the care family and friends are able to give.
Managing pain for patients in hospice care is one aspect of providing comfort and maintaining the quality of life. It involves regular assessment of pain intensity and characteristics, utilizing appropriate pain management strategies such as pharmacological interventions, non-pharmacological techniques, and complementary therapies.
Perform a comprehensive pain evaluation, including location, characteristics, onset, duration, frequency, quality, severity (e.g., 0–10 scale), and precipitating or aggravating factors. Note cultural issues impacting reporting and expression of pain. Determine the patient’s acceptable level of pain.
Provides baseline information from which a realistic plan can be developed, keeping in mind that verbal/behavioral cues may have a little direct relationship to the degree of pain perceived. Often the patient does not feel the need to be completely pain-free but is able to be more functional when pain is at a lower level on the pain scale.
Determine possible pathophysiological and/or psychological causes of pain
Pain is associated with many factors that may be interactive and increase the degree of pain experienced.
Assess the patient’s perception of pain, along with behavioral and psychological responses. Determine the patient’s attitude toward and/or use of pain medications and locus of control (internal and/or external).
Helps identify patients’ needs and pain control methods found to be helpful or not helpful in the past. Individuals with an external locus of control may take little or no responsibility for pain management.
Assess the degree of personal adjustment to diagnosis, such as anger, irritability, withdrawal, and acceptance.
These factors are variable and often affect the perception of pain and the ability to cope and the need for pain management.
Identify specific signs and symptoms and changes in pain requiring notification of healthcare provider and medical intervention.
Unrelieved pain may be associated with the progression of a terminal disease process, or be associated with complications that require medical management.
Verify current and past analgesic and narcotic drug use (including alcohol).
May provide insight into what has or has not worked in the past or may impact the therapy plan.
Monitor for/discuss the possibility of changes in mental status, agitation, confusion, and restlessness.
Although causes of deterioration are numerous in terminal stages, early recognition and management of the psychological component is an integral part of pain management.
Encourage the patient and family to express feelings or concerns about narcotic use.
Inaccurate information regarding drug use or fear of addiction or oversedation may impair pain control efforts.
Discuss with SO(s) ways in which they can assist patients and reduce precipitating factors.
Promotes involvement in care and belief that there are things they can do to help.
Involve caregivers in identifying effective comfort measures for patients: use of non-acidic fluids, oral swabs, lip salve, skin and/or perineal care, and enema. Instruct in the use of oxygen and/or suction equipment as appropriate.
Managing troubling symptoms such as nausea, dry mouth, dyspnea, and constipation can reduce patients’ suffering and family anxiety, improving quality of life and allowing the patient/family to focus on other issues.
Demonstrate and encourage the use of relaxation techniques, guided imagery, and meditation.
May reduce the need for/can supplement analgesic therapy, especially during periods when the patient desires to minimize the sedative effects of medication.
Establish a pain management plan with the patient, family, and healthcare provider, including options for the management of breakthrough pain.
Inadequate pain management remains one of the most significant deficiencies in the care of the dying patient. A plan developed in advance increases the patient’s level of trust that comfort will be maintained, reducing anxiety.
Schedule and administer analgesics as indicated to maximal dosage. Notify the physician if the regimen is inadequate to meet the pain control goal.
Helps maintain an “acceptable” level of pain. Modifications of drug dosage or combinations may be required.
Instruct the patient, family, or caregiver in the use of an IV pump (PCA) for pain control.
When the patient controls the dosage and administration of medication, pain relief is enhanced and quality of life is improved.
Recommended nursing diagnosis and nursing care plan books and resources.
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Ackley and Ladwig’s Nursing Diagnosis Handbook: An Evidence-Based Guide to Planning Care
We love this book because of its evidence-based approach to nursing interventions. This care plan handbook uses an easy, three-step system to guide you through client assessment, nursing diagnosis, and care planning. Includes step-by-step instructions showing how to implement care and evaluate outcomes, and help you build skills in diagnostic reasoning and critical thinking.
Nursing Care Plans – Nursing Diagnosis & Intervention (10th Edition)
Includes over two hundred care plans that reflect the most recent evidence-based guidelines. New to this edition are ICNP diagnoses, care plans on LGBTQ health issues, and on electrolytes and acid-base balance.
Nurse’s Pocket Guide: Diagnoses, Prioritized Interventions, and Rationales
Quick-reference tool includes all you need to identify the correct diagnoses for efficient patient care planning. The sixteenth edition includes the most recent nursing diagnoses and interventions and an alphabetized listing of nursing diagnoses covering more than 400 disorders.
Nursing Diagnosis Manual: Planning, Individualizing, and Documenting Client Care
Identify interventions to plan, individualize, and document care for more than 800 diseases and disorders. Only in the Nursing Diagnosis Manual will you find for each diagnosis subjectively and objectively – sample clinical applications, prioritized action/interventions with rationales – a documentation section, and much more!
All-in-One Nursing Care Planning Resource – E-Book: Medical-Surgical, Pediatric, Maternity, and Psychiatric-Mental Health
Includes over 100 care plans for medical-surgical, maternity/OB, pediatrics, and psychiatric and mental health. Interprofessional “patient problems” focus familiarizes you with how to speak to patients.
Other recommended site resources for this nursing care plan:
More care plans related to basic nursing concepts:
Matt Vera, a registered nurse since 2009, leverages his experiences as a former student struggling with complex nursing topics to help aspiring nurses as a full-time writer and editor for Nurseslabs, simplifying the learning process, breaking down complicated subjects, and finding innovative ways to assist students in reaching their full potential as future healthcare providers.
As an experienced RN X 34 years in more varied clinical and off-site not hands on clinical workflows, I am now finding this wonderful role of Hospice Nursing and really love what I am doing now with my career!! This information you shared is a great network builder in how I address these very different methods with my patents, families, caregivers…to be all in the most solid headspace as possible with caring for, AND understanding there loved one, who may look and appear very different to them. I have a previous high functioning mother, also retired RN, who know has late onset Alzheimer’s and she is taking it pretty hard. Your content within your course will definitely help me in my work role; but nearly as/more important, will help me keep everything in perspective as I walk this path with my mama, and help my other family members who just simply don’t grasp the changes and why they are occurring….(ie. the anger outburst,, for one example). Thank you for a well presented topic with many great take-away tools. Terri Smith RN CM Reply
Felicia SibiyaHi Terri.
Hope you are in good health. I am impressed by the vast knowledge and skill you have acquired through the years in your career.
I am a retired registered general nurse I was working in one of the best private hospitals in my country. I am currently looking after my mother who has Alzheimer’s I am interested in starting a hospice or a nursing home in my hometown as I have noticed that the is a high demand for such facilities in my country. having said that I was wondering if could join hands with me in this endeavor Reply
