As a member of the hospice healthcare team, you play an important role in caring for your patients. Because of this, you will often learn private information about them – not just about their health, but also about their personal relationships, their financial situations, and other sensitive and personal information. It is important to understand that you have a legal and ethical responsibility to keep this information confidential and only share it – when necessary – with other healthcare professionals who are part of the patient’s care team. It is your responsibility to protect patient privacy.
Why is it important to keep healthcare information private?
In 1996, the Health Insurance Portability and Accountability Act (HIPAA) was passed to protect people’s health information. The main goal of HIPAA is to ensure that health information is kept private and secure, and only shared with those who need to know in order to provide care or process medical records. This law applies to everyone working in healthcare.
What does HIPAA protect?
HIPAA protects what is called “personal health information” (PHI). This includes any details that could identify a patient, such as:
Name
Medical record number
Date of birth
Address
Email address
Social security number
Only those directly involved in a patient’s care or those who handle billing or administrative tasks should have access to this information.
Your role as a member of the patient’s healthcare team
As a member of the patient’s healthcare team, it is important to follow HIPAA rules to protect your patient’s privacy. If you share a patient’s health information without permission, it can harm the patient and break the trust they have in you. Here are some important things to keep in mind:
Do not share information unnecessarily: Never discuss a patient’s health with friends, family, or on social media. Only discuss patient care with other healthcare workers who are directly involved in that patient’s care.
Keep conversations private: If you need to talk about a patient’s care with another healthcare worker, make sure you do so in a private place where others cannot overhear.
Secure patient records: Whether you are handling paper records or using electronic systems, always ensure that patient information is stored securely.
Why following HIPAA is important
By following HIPAA regulations, you help protect your patient’s privacy, ensure their information is handled with respect, and build trust. Patients and their families rely on you to keep their personal information safe, and HIPAA provides the guidelines you need to do so.
What are the guidelines of not following HIPAA?
Hospices and their employees must protect patient information at all times. If HIPAA rules are not followed, it can lead to serious consequences including fines, penalties, and even imprisonment. This applies not just to the hospice itself but also to any vendors or contractors who work with patient information.
Final thoughts
Understanding and following HIPAA is an essential part of your job as a member of a patient’s healthcare team. By keeping patient information private, you help ensure their safety, comfort, and trust in the care they receive. Remember, protecting privacy is not just a legal requirement – it is a crucial part of providing compassionate and respectful care.
Advanced directives give patients the ability to direct their medical care in advance. Advanced directives are legal documents that tell doctors and caregivers what a patient wants for their healthcare if the patient becomes too sick to speak or make decisions. Advanced directives explain what kind of medical care the patient would like to receive, or not receive, in different situations.
Advance directives can also name the person who should make medical decisions for the patient in the case that the patient is unable to make those decisions.
Who writes an advanced directive?
The patient, while they are still able to make decisions, will write the advanced directive. Sometimes a family member or a close friend will help the patient, but it is important that the patient’s wishes are clearly written down.
When are advanced directives used?
Advanced directives are used if the patient is too sick or injured to talk or to make decisions about their own care. For example, if a patient is unconscious or has a severe illness that makes it difficult for them to speak, doctors or caregivers will check the advanced directive to understand the patient’s preferences and to know what to do.
How should advanced directives be treated?
An advanced directive is a legal document and must be followed carefully. The following is some guidance for members of the patient’s care team, relating to the patient’s advanced directive:
Know where it is: It is important for members of the patient care team to know if the patient has an advanced directive and to know where it is kept. This will help ensure that the patient’s wishes are followed, if the need arises.
Respect the patient’s wishes: The advanced directive represents the patient’s voice when the patient cannot speak for himself or herself. It is important to follow what it says in the advanced directive.
Communicate: If a member of the care team is not sure that they understand what is written in the advanced directive, they should speak with other members of the care team. Together, they can work to understand the advanced directives and ensure that the patient’s wishes are honored.
Stay calm and supportive: This situation is often stressful. It is important that members of the care team remain calm and provide support to the patient and members of the family.
When taking care of patients in hospice, it’s important to understand the difference between over-the-counter (OTC) and prescription medications. Knowing how these medications work and what they’re used for can help you provide better care.
What Are Over-the-Counter Medications?
Over-the-counter (OTC) medications are medicines you can buy without a doctor’s prescription. These include things like pain relievers (like Tylenol or Advil), cold medicines, and allergy pills. People use OTC medications for common health problems like headaches, colds, or minor aches and pains. These medicines are generally safe when used as directed on the label. But it’s still important to be careful, especially when patients are taking other medications.
What Are Prescription Medications?
Prescription medications are medicines that a doctor or other healthcare provider must prescribe. These drugs are often stronger than OTC medicines and are used to treat more serious health conditions. Because they are stronger, they can have more side effects or cause harm if not taken exactly as prescribed. Patients in hospice care often take prescription medications to manage pain, control symptoms, or treat chronic conditions.
Key Differences Between OTC and Prescription Medications
Access: You can buy OTC medications at a store without a prescription, but you need a doctor’s order to get prescription medications.
Strength: Prescription medications are usually stronger and meant for more serious conditions.
Safety: Both types of medications are safe when used correctly, but prescription medications require more careful monitoring because of their strength and potential side effects.
What Hospice Aides Need to Know About Medications
Never Give Medications Without Approval: Always follow the care plan and never give a patient any medication, including OTC, without approval from a nurse or doctor.
Be Aware of Interactions: Some OTC medications can interact with prescription drugs and cause problems. For example, taking aspirin (an OTC pain reliever) with certain prescription blood thinners can increase the risk of bleeding.
Watch for Side Effects: Both OTC and prescription medications can have side effects. Be alert for any changes in the patient’s condition, and report anything unusual to the nurse or healthcare provider.
Follow State Guidelines: Each state has specific rules about what hospice aides can and cannot do when it comes to assisting with medications. In some states, aides may help with medication reminders, but they should not give medications directly. Always follow the guidelines in your state and the care plan for each patient.
Knowing how to provide support during times of hardship or crisis can make a significant difference in someone’s life. The Ring Theory, developed by clinical psychologist Susan Silk, offers a framework for offering support. Specifically, Ring Theory provides a framework for offering support that centers around the needs of the person experiencing the crisis. In this blog we will explore the key principles of this theory and its practical implications for providing effective support.
The Concept of the Ring Theory
At its core, the Ring Theory outlines a model for providing support during times of crisis. It is based on the idea of concentric circles. The person who is directly affected by the crisis is at the center of these concentric circles. Surrounding circles represent their closest relationships, with each circle representing a different level of connection to the individual in need.
Understanding the Circles
Center Circle: The innermost circle contains the person experiencing the crisis. This individual is at the heart of the support network and should be the primary focus of empathy and assistance.
Immediate Family and Closest Friends: The next circle consists of the individual’s immediate family members and closest friends. These individuals have the strongest emotional connection to the person in need. They play a crucial role in providing support.
Extended Family and Close Friends: The third circle includes extended family members, colleagues, and friends. They are also close to the individual but may not be directly involved in the individual’s day-to-day life.
Acquaintances and Casual Friends: The outer circles comprise acquaintances, colleagues, and distant friends who may have a connection to the person in need but are less emotionally involved.
According to the Ring Theory, each concentric circle is advised to “comfort in” and “dump out.” This means that individuals in the outer circles may talk about their stress to anyone in the larger circles but must provide comfort and support to those in smaller circles.
Practical Application of the Ring Theory
When applying the Ring Theory, it is important to prioritize the needs of the person at the center of the crisis. Instead of burdening that person with our own emotions or seeking validation for our feelings, we should focus on offering comfort, practical assistance, and a listening ear.
Offer Comfort, Not Complaints: Prioritize the needs and emotions of the person in crisis over your own. Offer words of comfort, empathy, and practical support.
Listen Without Judgment: Provide a safe space for the person to express their feelings without fear of judgment or criticism.
Respect Boundaries: Understand that everyone copes with crisis differently. Respect the person’s boundaries and preferences for receiving support.
Provide Practical Assistance: Offer tangible help such as running errands, preparing meals, or providing childcare to alleviate some of the person’s burdens.
Avoid Sharing Your Own Struggles: Refrain from sharing your own struggles unless explicitly invited to do so. Focus on validating the person’s feelings and experiences instead.
Additional Considerations
Beyond understanding the core principles of the Ring Theory, it’s important to recognize that providing support during a crisis can be complex and multifaceted. There are many considerations that one needs to keep in mind. Here we list some:
Cultural Sensitivity: Different cultures may have unique approaches to coping with crisis and seeking support. Be sensitive to cultural norms and preferences when offering assistance.
Self-Care for Caregivers: Supporting someone in crisis can take a toll on your own emotional well-being. Remember to prioritize self-care and seek support from your own network when needed.
Professional Resources: In some cases, the support needed may go beyond what friends and family can provide. Seek professional help or refer the individual to appropriate resources if necessary.
Where can you get more information
Ring Theory Helps Us Bring Comfort In – Psychology Today article discussing the principles of the Ring Theory and its application in supporting individuals in crisis.
The Comfort in, Dump Out Theory Explained – Psychology Today article providing an overview of the Comfort in, Dump Out Theory and its relevance in offering support during difficult times.
By understanding and applying the principles of the Ring Theory, we can provide meaningful support to those who need it most, fostering a culture of empathy, compassion, and understanding.
Caregivers play a critical role in hospice care, where the focus is on providing comfort and support to individuals nearing the end of life. These unsung heroes, often family members or close friends, offer physical, emotional, and spiritual support to their loved ones during one of life’s most challenging transitions. However, the demands of caregiving can take a toll, leading to burnout and reduced well-being. Recognizing and addressing caregiver burnout is essential for ensuring ongoing support for patients and their families.
Understanding Caregiver Burnout:
Caregiver burnout is a multifaceted phenomenon that is characterized by physical, emotional, and mental exhaustion. It can manifest as feelings of overwhelming stress, compassion fatigue, depression, and a sense of hopelessness. According to the Mayo Clinic, symptoms of burnout may include fatigue, irritability, withdrawal from social activities, and a lack of motivation or interest in caregiving tasks. If caregiver burnout is not addressed, it can have a negative impact on the quality of care provided to patients and negatively impact caregivers’ own health and well-being.
Research conducted by the Ann & Robert Lurie Children’s Hospital of Chicago and the University of Pittsburgh sheds light on the prevalence and impact of caregiver burnout in hospice settings. Dr. Michael Certo, assistant professor of pediatrics at Lurie, emphasizes the high risk of emotional, social, and financial consequences for caregivers. The study found that caregiver burnout is alarmingly common among those providing end-of-life care, underscoring the need for targeted interventions and support mechanisms.
Assessing Caregiver Distress:
To effectively address caregiver burnout, healthcare providers must first identify individuals at risk. The research team implemented a standardized method for assessing caregiver distress, recognizing the importance of early intervention in mitigating burnout. The caregiver self-assessment questionnaire, developed by the American Geriatric Society, emerged as a valuable tool for screening caregivers’ well-being. This brief yet comprehensive metric enables clinicians to identify signs of burnout and tailor support interventions accordingly.
Supporting Caregivers:
Once caregiver distress is identified, healthcare providers can offer a range of supportive measures to promote resilience and well-being. These may include encouraging caregivers to prioritize self-care, providing access to respite care services, facilitating peer support groups, and connecting caregivers with community resources. Additionally, caregivers may benefit from educational programs aimed at enhancing coping skills, stress management techniques, and communication strategies.
The Impact of Caregiver Burnout on Hospice Care:
Caregiver burnout not only affects individual caregivers but also has broader implications for hospice care delivery. Research has shown that patients who do not have adequate caregiver support may be less likely to choose hospice care, leading to delayed referrals and suboptimal end-of-life experiences. Moreover, caregiver burnout can strain healthcare resources and contribute to caregiver turnover, compromising the continuity and quality of care provided to patients and families.
Addressing the Financial Burden:
In addition to the emotional and physical toll, caregiving often imposes a significant financial burden on families. According to AARP, unpaid family caregivers in the United States collectively spend billions of dollars annually on caregiving-related expenses. These costs may include medical bills, prescription medications, home modifications, and lost wages due to missed workdays. Recognizing the financial challenges faced by caregivers is essential for implementing policies and programs aimed at alleviating economic strain and promoting financial security.
In conclusion, caregiver burnout poses a significant challenge in hospice care, impacting both caregivers and the patients they serve. By implementing comprehensive assessment tools, providing targeted support interventions, and addressing the financial burdens associated with caregiving, healthcare providers can foster resilience and well-being among caregivers. Nurturing caregivers not only enhances the quality of care provided but also ensures that patients and families receive the compassionate support they need during life’s final journey.
Where Can you Get Additional Information:
Mayo Clinic. (n.d.). Job burnout: How to spot it and take action. Retrieved from Mayo Clinic
National Institute on Aging. (n.d.). Taking Care of Yourself as a Caregiver. Retrieved from National Institute on Aging
AARP Public Policy Institute. (2021). Family Caregiving and Out-of-Pocket Costs: 2016 Report. Retrieved from AARP Public Policy Institute
American Geriatrics Society. (n.d.). Caregiver Self-Assessment Questionnaire. Retrieved from American Geriatrics Society
Hospice Foundation of America. (n.d.). Caregiving at the End of Life: Finding Resilience. Retrieved from Hospice Foundation of America
Morrison, R.S. et al. (2009). Palliative Care Consultation Teams Cut Hospital Costs for Medicaid Beneficiaries. Health Affairs, 28(3), w450-w460. Retrieved from Health Affairs
Anticipatory grief, also referred to as anticipatory loss or preparatory loss, is a unique form of mourning that occurs before the actual loss takes place. It is the feeling of loss that is felt before the loss happens. While traditional grief typically follows a loss, anticipatory grief begins before the loss and can be triggered by the anticipation of impending death or significant life changes. In our minds it is the “beginning of the end.” Typically, in grief, one is focused on a loss in the past. But in anticipatory grief one is focused on the loss ahead.
What is anticipatory grief?
Anticipatory grief is the emotional response to an anticipated loss. It involves mourning the impending death of a loved one or preparing for other significant life changes, such as the end of a relationship, a terminal diagnosis, or a major life transition. Anticipatory grief allows individuals to begin processing their emotions before the loss occurs, which can help facilitate the grieving process later on.
What is the difference between conventional grief and anticipatory grief?
Conventional grief involves mourning a loss that has already occurred. Anticipatory grief is forward looking. It is grieving a loss that has not yet occurred but that one believes will occur. Anticipation of loss still leaves room for hope that the loss will not happen. This hope, however unrealistic it may be, often leaves anticipatory grievers “hanging on to possibilities” in unrealistic and non-helpful ways.
Who experiences anticipatory grief?
Anticipatory grief can be experienced by anyone who is facing an impending loss or significant life change. This may include family members and friends of terminally ill individuals, individuals facing their own terminal illness, caregivers, and those experiencing major life transitions such as divorce or retirement. Anticipatory grief is not limited by age, gender, or background, and can affect people from all walks of life. Younger caregivers and patients often experience more severe anticipatory grief.
When is anticipatory grief experienced?
Anticipatory grief can occur at any time when an individual is faced with the prospect of impending loss or significant life changes. It may begin as soon as a terminal diagnosis is received or when a major life transition is anticipated. The duration of anticipatory grief can vary widely, lasting anywhere from weeks to months or even years depending on the circumstances. Anticipatory grief may also continue after the loss has occurred, as individuals navigate the ongoing impact of their loss.
What are signs of anticipatory grief?
People experiencing anticipatory grief may show some of the following signs:
Feelings of sadness, anxiety, or depression
Preoccupation with thoughts of loss
Changes in appetite or sleep patterns
Withdrawal from social activities or relationships
Difficulty concentrating or making decisions
Increased irritability or anger
Physical symptoms such as fatigue, headaches, or stomach problems
What are the stages of anticipatory grief?
There are four phases that one may feel while experiencing anticipatory grief. These may come in any order or simultaneously.
Accepting that death is inevitable. This phase often brings sadness and depression
Feelings of concern for the dying person. For family and friends, this phase often brings feelings of regret – regret over past actions, prior unresolved arguments, and the like. For the dying person this may be regret over missed opportunities or fear of dying.
Rehearsing the death. A person may become focused on planning for death including funeral arrangements, saying goodbyes, and what needs to be done in preparation for death.
Imagining the future. Family and friends may envision the future without the loved one. This may include imagining holidays and other special occasions with the loved one missing. The patient may imagine how the family and friends will experience life without him. The patient may also begin to imagine the afterlife.
How can anticipatory grief be treated?
While anticipatory grief can be challenging, there are strategies that can help individuals cope with their emotions and navigate the grieving process:
1. Seek support: Reach out to friends, family members, or a therapist for emotional support and guidance.
2. Practice self-care: Take care of your physical and emotional well-being by eating well, exercising regularly, and engaging in activities that bring joy and relaxation.
3. Communicate openly: Share your feelings and concerns with loved ones and healthcare providers. Talking about your emotions can help validate your experiences and provide comfort.
4. Create meaningful moments: Make time to create lasting memories with your loved one and engage in activities that bring you closer together.
5. Seek professional help: If you’re struggling to cope with anticipatory grief, consider seeking help from a mental health professional. Therapy or counseling can provide valuable support and coping strategies.
Is anticipatory grief beneficial?
Anticipatory grief is a natural response to impending loss or significant life changes. By understanding what anticipatory grief is, who experiences it, when it occurs, signs of anticipatory grief, and strategies for coping, individuals can better navigate this challenging emotional journey. The research is contradictory as to whether anticipatory grief is beneficial in helping cope after the loss has occurred. Some research suggests that anticipatory grief may help with coping with the loss. Other research suggests that it has no effect on post-death bereavement.
Seeking support from loved ones and mental health professionals, practicing self-care, and communicating openly about feelings are essential steps in coping with anticipatory grief.
