Your role as a hospice registered nurse case manager is pivotal in providing compassionate end-of-life care to patients and supporting their families. Effective education during admission and post-admission visits is crucial to ensure comprehensive care and minimize unnecessary visits and calls. Here's a guide to the educational topics you should cover during these visits, with a focus on patient comfort and preparing for a dignified end-of-life journey.
Admission Visit
During the admission visit, you have the opportunity to set the tone for the patient's hospice journey. You are the primary contact and coordinator of care for the patient and their family. Your role is to provide compassionate and holistic care that respects the patient's wishes and values. To ensure a smooth transition and to provide a solid foundation for patient-centered care, cover these key topics during the admission visit:
Introduction and Orientation
Introduce yourself and your role as a hospice case manager. Explain that you will be visiting the patient regularly, monitoring their condition, and adjusting their care plan as needed. You will also be communicating with other members of the hospice team, such as physicians, nurses, social workers, chaplains, and volunteers.
Explain the hospice philosophy and goals of care. Hospice is a type of care that focuses on improving the quality of life for patients with terminal illnesses and their families. The goals of hospice care are to relieve pain and suffering, provide emotional and spiritual support, and help the patient and family cope with the end-of-life process.
Clarify the difference between curative and palliative care. Curative care is aimed at curing or reversing the disease, while palliative care is aimed at easing the symptoms and enhancing the comfort of the patient. Hospice care is a form of palliative care that is provided when the patient has a life expectancy of six months or less. Hospice care does not mean giving up hope, but rather accepting the reality of the situation and making the most of the remaining time.
Assessment and Care Plan
Assess the patient's physical, emotional, and psychosocial needs. Use a comprehensive and holistic approach that considers the patient's medical history, current symptoms, medications, functional status, cognitive status, emotional state, spiritual beliefs, cultural background, and personal preferences.
Collaborate with the patient and family to create a personalized care plan. The care plan should reflect the patient's goals and values, and address their physical, emotional, and spiritual needs. The care plan should also include the frequency of visits, the services and equipment provided, the roles and responsibilities of the hospice team and the family, and the emergency contact information.
Discuss comfort medications, symptom management, and pain control. Explain the purpose and benefits of comfort medications, such as opioids, anti-nausea drugs, and sedatives. Emphasize that comfort medications are not intended to hasten death, but rather to relieve distress and improve the quality of life. Teach the patient and family how to use, store, and dispose of the medications safely and appropriately. Address any concerns or fears they may have about addiction, tolerance, or side effects. Explain the principles and methods of symptom management and pain control, such as using a pain scale, reporting changes, and applying non-pharmacological interventions.
Symptom Management
Address common symptoms such as pain, shortness of breath, and nausea. Explain the possible causes, effects, and treatments of these symptoms. Provide tips and strategies to prevent, reduce, or cope with these symptoms, such as positioning, relaxation, distraction, and dietary modifications.
Explain the importance of regular communication regarding symptoms. Encourage the patient and family to report any new or worsening symptoms and any changes in the patient's condition, preferences, or goals. Assure them that you are available to answer their questions, address their concerns, and adjust the care plan as needed. Remind them that timely and accurate communication is essential for providing optimal care and comfort for the patient.
Educate the family on administering PRN medications effectively. PRN medications are medications that are given as needed, rather than on a fixed schedule. They are usually used to treat breakthrough pain or other acute symptoms not controlled by regular medications. Teach the family how to recognize the signs and triggers of these symptoms, how to measure and administer the PRN medications, and how to monitor and document the effects and side effects of the medications.
Family Support and Education
Provide emotional support to the patient's family members. Acknowledge the stress and grief that they may be experiencing and validate their feelings and reactions. Listen to their fears, worries, and hopes, and offer empathy and reassurance. Help them cope with the emotional and practical challenges of caring for a terminally ill loved one, such as managing their health, balancing their roles and responsibilities, and accessing resources and support.
Educate them about the hospice process, roles, and responsibilities. Explain the stages and signs of the dying process, and what to expect and do in each stage. Clarify the roles and responsibilities of the hospice team and the family, and how they can work together to provide the best care for the patient. Inform them about the services and resources that hospice offers, such as respite care, bereavement support, and advance care planning.
Encourage open communication within the family. Help the family communicate their needs, feelings, and preferences with each other and with the hospice team. Facilitate family meetings and discussions and mediate any conflicts or disagreements that may arise. Encourage the family to express their love, gratitude, and forgiveness to the patient, and to share their memories, stories, and wishes.
Post-Admission Visit
Following the admission visit, continue to build rapport and reinforce essential information during subsequent visits. The post-admission visit is a follow-up visit that usually occurs within 48 hours after the admission visit. The purpose of the post-admission visit is to evaluate the patient's condition, review the care plan, and address any issues or concerns that may have arisen since the admission visit. During the post-admission visit, cover these key topics to ensure the continuity and quality of care:
Evaluation and Review
Evaluate the patient's condition and response to the care plan. Assess the patient's vital signs, symptoms, pain level, comfort level, and functional status. Ask the patient and family how they are coping and feeling, and if they have any questions or concerns. Review the care plan and the medications, and check if they are effective, appropriate, and consistent with the patient's goals and values.
Review the hospice process, roles, and responsibilities. Remind the patient and family about the hospice philosophy and goals of care, and the difference between curative and palliative care. Review the roles and responsibilities of the hospice team and the family, and the frequency and schedule of visits. Review the contact information for emergencies and routine matters, and the procedures for reporting changes or problems.
Review the symptom management and pain control strategies. Remind the patient and family about the common symptoms and their causes, effects, and treatments. Review the tips and strategies to prevent, reduce, or cope with these symptoms, such as positioning, relaxation, distraction, and dietary modifications. Review the purpose and benefits of comfort medications, and how to use, store, and dispose of them safely and appropriately. Review the principles and methods of symptom management and pain control, such as using a pain scale, reporting changes, and applying non-pharmacological interventions.
Issues and Concerns
Address any issues or concerns that may have arisen since the admission visit. Ask the patient and family if they have encountered any difficulties, challenges, or problems with the care plan, the medications, the equipment, or the hospice team. Listen to their feedback and suggestions and offer solutions and alternatives. Adjust the care plan and the medications as needed, and coordinate with other members of the hospice team to resolve any issues or concerns.
Address any fears or myths about hospice care. Some patients and families may have misconceptions or fears about hospice care, such as thinking that hospice means giving up hope, hastening death, or losing control. Explain the facts and benefits of hospice care and dispel any myths or rumors. Emphasize that hospice care is not about dying, but about living as well as possible in the remaining time. Emphasize that hospice care respects the patient's autonomy and dignity and supports the patient's choices and preferences.
Address any spiritual or existential issues. Some patients and families may face spiritual or existential issues, such as questioning the meaning of life, the purpose of suffering, or the existence of God. Respect the patient's and family's beliefs and values, and do not impose your views or opinions. Provide spiritual support and guidance, and refer them to a chaplain, a clergy, or a counselor if they wish. Help them find sources of hope, peace, and comfort, such as faith, prayer, meditation, or nature.
Education and Support
Educate the patient and family about the stages and signs of the dying process. Explain the physical, emotional, and spiritual changes that may occur as the patient approaches the end of life, and how to recognize and respond to them. Explain the signs of imminent death, such as changes in breathing, circulation, consciousness, and skin color. Explain what to do and who to call when death occurs, and what to expect after death, such as the legal and funeral arrangements.
Educate the patient and family about advance care planning and end-of-life care options. Explain the importance and benefits of advance care planning, which is the process of making decisions about the type of care and treatment the patient wants or does not want at the end of life. Explain the different types of advance directives, such as living wills, health care proxies, and do-not-resuscitate orders. Explain the different end-of-life care options, such as hospice, palliative care, and comfort care. Help the patient and family complete and document
Medication Management
Review all medications explaining which medications are paid for by hospice and which ones will be the family and patient's responsibility. Hospice covers the cost of medications that are related to the terminal illness and the palliation of symptoms. The patient and family are responsible for the cost of medications that are unrelated to the terminal illness or are for curative purposes.
Review the medication regimen and ensure the family's understanding. Explain the purpose, dosage, route, frequency, and side effects of each medication. Demonstrate how to administer the medications correctly and safely. Use teach-back methods to verify the family's comprehension and competence.
Emphasize the importance of adherence to medication schedules. Explain that following the medication schedules is essential for achieving the best possible outcomes and avoiding complications. Remind the family to keep track of the medication supply and to notify the hospice team if they need refills or changes.
Review all comfort medications including indications for use, frequency they can be given, and the importance of journaling any use of PRN medications. Comfort medications are medications that are given as needed, rather than on a fixed schedule. They are usually used to treat breakthrough pain or other acute symptoms not controlled by regular medications. Review the signs and triggers of these symptoms, how to measure and administer the comfort medications, and how to monitor and document the effects and side effects of the medications.
Visit Frequencies
Review how often scheduled visits occur. Explain that the frequency of visits depends on the patient's needs and preferences and may change over time. The hospice team will coordinate with the patient and family to determine the optimal visit schedule. The hospice team includes the case manager, the physician, the nurse, the social worker, the chaplain, the volunteer, and the bereavement counselor.
Access time preferences while maintaining a “no promises” to being able to meet them if doing so will create problems for other patients as well as yourself. Ask the patient and family about their preferred times for visits and try to accommodate them as much as possible. However, do not make promises that you cannot keep, as this may lead to disappointment and frustration. Explain that there may be unforeseen circumstances that may affect the visit schedule, such as emergencies, weather, traffic, or staff availability.
How to Access 24-hour Support
Remind them of the hospice agency's main number(s) and when to call for assistance. Provide the patient and family with the hospice agency's contact information and instruct them to call the main number for any questions, concerns, or problems. Explain that the hospice agency has a 24-hour support system, and that there is always someone available to answer their calls and help them.
Reinforce education in symptom management methods based on the most pressing or foreseeable issues so they are comfortable trying those prior to calling for help. Review the common symptoms and their causes, effects, and treatments. Review the tips and strategies to prevent, reduce, or cope with these symptoms, such as positioning, relaxation, distraction, and dietary modifications. Review the comfort medications and how to use them effectively. Encourage the patient and family to try these methods first before calling for help unless the symptom is severe or life-threatening.
Keeping Track of Changes in Condition
Educate on the importance of caregiver journaling for changes in condition as well as giving PRN medications. Explain that keeping a journal of the patient's condition and medication use helps monitor the patient's progress and adjust the care plan. The journal should include the date, time, symptom, medication, dose, route, effect, and side effect. The journal should also include any changes in the patient's physical, emotional, or spiritual status, such as appetite, mood, energy, sleep, or communication.
Provide the patient and family with a journal template or a sample journal entry. Show them how to fill out the journal accurately and completely. Explain that the journal is a valuable tool for communication and documentation and that they should share it with the hospice team during the visits.
Communication Skills
Provide tips for effective communication between the patient, family, and healthcare team. Explain that communication is vital for ensuring the quality and safety of care, as well as the satisfaction and well-being of the patient and family. Provide the following tips for effective communication:
Be clear and concise. Use simple and direct language and avoid jargon and slang.
Be respectful and empathetic. Use a calm and gentle tone and listen actively and attentively.
Be honest and realistic. Do not hide or exaggerate information, and do not make false promises or expectations.
Be assertive and proactive. Express your needs, feelings, and preferences, and ask for help or clarification when needed.
Be open and flexible. Accept feedback and suggestions and be willing to compromise and adapt.
Encourage asking questions and seeking clarification. Explain that asking questions and seeking clarification is not a sign of weakness or ignorance, but a sign of curiosity and interest. Encourage the patient and family to ask questions and seek clarification whenever they have doubts, concerns, or confusion. Provide examples of questions and clarifications that they can ask, such as:
What is the purpose of this medication or treatment?
How will this medication or treatment affect me or my loved one?
What are the possible risks or side effects of this medication or treatment?
How can I prevent or manage these risks or side effects?
What are the alternatives or options to this medication or treatment?
What are the goals and outcomes of this medication or treatment?
How can I measure or monitor the effectiveness of this medication or treatment?
What should I do or who should I call if I have a problem or a question about this medication or treatment?
Advance Care Planning
Discuss advance directives, living wills, and medical power of attorney. Explain that advance care planning is the process of making decisions about the type of care and treatment the patient wants or does not want at the end of life. Explain that advance directives are legal documents that state the patient's wishes and preferences for end-of-life care. Explain that a living will is a document that specifies the patient's choices for life-sustaining treatments, such as CPR, ventilator, feeding tube, or dialysis. Explain that a medical power of attorney is a document that appoints a person to make health care decisions for the patient if the patient becomes unable to do so.
Help the patient express their preferences for end-of-life care. Ask the patient about their values, beliefs, and goals for end-of-life care. Ask the patient about their fears, worries, and hopes for end-of-life care. Ask the patient about their comfort level and quality of life. Ask the patient about their spiritual and religious needs. Help the patient identify and prioritize their preferences for end-of-life care, such as pain relief, symptom management, location of death, family involvement, or organ donation.
Help the patient complete and document their advance directives. Provide the patient with the appropriate forms and instructions for completing their advance directives. Assist the patient in filling out the forms and signing them. Witness and verify the patient's signature and capacity. Advise the patient to share their advance directives with their family, health care proxy, and health care providers. Store a copy of the advance directives in the patient's medical record and in a visible and accessible place in the patient's home.
As part of this discussion, please ask about the funeral home and funeral home planning and provide a connection with the hospice social worker.
Psychosocial Support
Address the emotional needs of both patients and families. Acknowledge the stress and grief that they may be experiencing and validate their feelings and reactions. Listen to their fears, worries, and hopes, and offer empathy and reassurance. Help them cope with the emotional and practical challenges of caring for a terminally ill loved one, such as managing their health, balancing their roles and responsibilities, and accessing resources and support.
Offer resources for counseling, support groups, and bereavement services. Explain that counseling, support groups, and bereavement services are available to help the patient and family deal with the emotional and psychological aspects of end-of-life care. Explain that counseling can provide individual or family therapy, crisis intervention, or grief counseling. Explain that support groups can provide peer support, education, or social activities. Explain that bereavement services can provide follow-up care, memorial services, or referrals. Provide the patient and family with contact information and details of these resources and encourage them to use them as needed.
This is a good time to connect them with the hospice psychosocial team.
Conclusion
As a hospice nurse, you have the privilege and responsibility of caring for patients and families during one of the most difficult and sacred times of their lives. Your educational visits during admission and post-admission are crucial for establishing trust, rapport, and understanding with them. During these visits, you can cover a variety of topics that are relevant and important for their care, such as medication management, visit frequencies, 24-hour support, changes of condition, communication skills, advance care planning, and psychosocial support. By providing clear, concise, and empathic education, you can help them cope with the physical, emotional, and spiritual challenges of end-of-life care. You can also empower them to make informed decisions, express their preferences, and achieve their goals. By doing so, you can enhance the quality and dignity of their hospice journey.
