by editor | May 10, 2024 | Hospice 101 - Aides, Hospice 101 - Chaplain, Hospice 101 - Nurses, Hospice 101 - Social Workers, Resources and Readings
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
by editor | Mar 20, 2024 | Grief & Loss - Aides, Grief & Loss - Chaplain, Grief & Loss - Nurses, Grief & Loss - Social Workers, Grief and Loss
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.
by editor | Mar 18, 2024 | Grief & Loss - Aides, Grief & Loss - Nurses, Grief & Loss - Social Workers, Grief and Loss
Grief is the emotional, psychological, and physical response to loss. It is a natural process that helps individuals come to terms with the reality of their loss and adjust to life without the person or thing they’ve lost. Whether it’s the death of a loved one, the end of a relationship, or a major life change, grief can affect individuals of all ages and backgrounds. Grief can manifest in various ways, including sadness, anger, guilt, confusion, and physical symptoms such as fatigue or changes in appetite.
Who experiences grief?
Anyone can experience grief, regardless of age, gender, or background. Grief is a universal human experience that affects people of all cultures and walks of life. Common triggers for grief include the death of a loved one, divorce or separation, the loss of a job, a serious illness or injury, or a significant life transition such as moving to a new city or retiring.
When is grief experienced?
Grief can be experienced at any time following a loss, and there is no set timeline for the grieving process. While some individuals may begin to experience grief immediately after a loss, others may not fully process their emotions until weeks, months, or even years later. Grief can also be triggered by anniversaries, holidays, or other significant reminders of the loss.
What are signs of grief?
Signs of grief can vary widely from person to person, but common symptoms may include:
- Intense sadness or depression
- Feelings of numbness or disbelief
- Anger or irritability
- Guilt or self-blame
- Difficulty concentrating or making decisions
- Changes in appetite or sleep patterns
- Physical symptoms such as fatigue, headaches, or stomach problems
How can grief be treated?
While grief is a natural and unavoidable part of life, there are strategies that can help individuals cope with their loss and navigate the grieving process:
1. Allow yourself to feel: It’s important to acknowledge and express emotions, even if they are painful or difficult to bear. A person who is grieving should give himself permission to grieve in his own way and at his own pace.
2. Seek support: : It is important that people who are grieving reach out to friends, family members, or a therapist for support. Talking about feelings with others who understand can provide comfort and validation.
3. Take care of yourself: Practicing self-care by eating well, exercising regularly, getting plenty of rest, and engaging in activities that bring joy and relaxation are important aspects to treating grief.
4. Honor the loved one: Find ways to remember and honor the person who was lost. This could involve creating a memorial, participating in rituals or traditions, or finding meaningful ways to keep their memory alive.
5. Seek professional help: A grieving person who is struggling to cope with the grief or who is experiencing prolonged or severe symptoms should consider seeking help from a mental health professional. Therapy or counseling can provide valuable support and guidance during the grieving process.
Grief is a natural and universal response to loss that affects individuals in different ways. By understanding what grief is, who experiences it, when it occurs, signs of grief, and strategies for coping, individuals can navigate the grieving process with greater resilience and self-compassion. Seeking support is often beneficial to many who are grieving – whether through bereavement groups, friends, or professional help. And it is important to remember that patience is required during the grieving process as it may take time to heal and find peace after loss.
by editor | Feb 25, 2024 | Patient Care, Teaching Tools
People with terminal illness experience pain at the end of life and for many, this pain goes untreated. One of the key elements of hospice care is effectively managing the patient’s pain. Untreated or undertreated pain results in needless suffering – due to physical pain and mental distress. However, family caregivers often have a difficult time assessing their loved one’s pain. Further, they are often concerned with side effects of pain medications, including concerns of addiction to or tolerance of pain medications. Further, both patients and family caregivers often have trouble communication with the hospice team the degree and nature of pain that the patient is experiencing. This often leads to ineffective pain management and needless suffering in end-of-life.
What are some considerations when giving pain medication?
Respect
Respect the patient’s wishes regarding pain management. Understanding a patient’s goals and values guides the care team in providing personalized and compassionate care.
Consult
Pain medication decisions are made in consultation with the patient, considering their preferences, values, and goals for care.
Collaborate
The hospice team includes the primary physician, medical director, nurse, social worker, chaplain, hospice aide, caregivers, and patient. Everyone works together to create the right plan.
How should pain medication be administered and monitored?
Individualized and Regular Assessment
Pain medicine is administered based on individualized assessments of the patient’s pain levels. Regular assessments of pain are important for managing pain and ensuring the plan remains effective.
Address pain early
Addressing pain before it becomes too severe can contribute to more effective pain control and improved quality of life.
Communication
Encourage patients to communicate openly about their pain levels. This information is crucial for healthcare providers to make informed decisions about medication adjustments. Regular communication between caregivers and healthcare providers ensures an accurate understanding about the patient’s pain.
Low dose pain medicine
It is preferable to initiate low-dose medication to maintain alertness and minimize potential side effects.
Titration
Titrate pain medication up as needed, to achieve optimal pain relief. Regular assessments guide the titration process ensuring the right balance between pain control and functionality. Often a long-acting pain medication is given coupled with a breakthrough pain medication, if needed, to keep pain at or below goal level.
Timely administration
Administer pain medicine in a timely manner, adhering to the prescribed schedule. Consistent dosing helps maintain a baseline level of comfort.
Pain log
Use a pain log to track pain levels, related factors, what medicine was given, dosage of medication, and time medication was given.
Education
The hospice team should educate the patient and caregivers on the use of pain medication, including dosage, timing, and potential side effects.
Monitor
Monitor for potential side effects of pain medication and collaborate with the healthcare team to address any concerns. This includes a careful assessment of the patient’s overall well being.
Consider a holistic approach to pain management
Many hospice agencies advocate for a holistic approach to pain management, including physical, emotional, and spiritual care. Alongside pain medications, this involves exploring and integrating non-pharmacological interventions such as massage, music therapy, aromatherapy, and relaxation techniques for a more comprehensive approach to pain relief.
Where can you find out more?
by editor | Mar 22, 2023 | Compliance and Regulatory - Directors, Metrics and KPIs, Rules and Regulations - Nurses, Rules and Regulations - Office Team
Patient length of stay is monitored to detect instances of inappropriate use of the hospice benefit or other deficiencies in the services delivered by the hospice provider. Length of stay is monitored for both very short length of stay as well as for length of stay that is longer than the norm.
What may unusual length of stay tell a hospice provider?
When patients are discharged alive with a short length of stay it may signal that the patient did not understand the hospice benefit when the patient was admitted to hospice. Or, patients may discharge live from hospice after just a few days because they were not satisfied with the services delivered by the hospice provider. Patients with length of stay longer than 180 days could be indicative of a patient who is no longer hospice eligible. Patients who are no longer eligible for service should be discharged from hospice and any payments that were received from Medicare while the patient was no longer eligible for services should be returned to Medicare. Failure to discharge the patient or failure to return the funds are examples of fraud and abuse.
How is length of stay calculated?
Length of stay is calculated based on the number of days that a patient receives hospice care. Specifically, for a patient who is discharged from hospice (whether or not the patient is discharged alive), the patient length of stay is calculated as follows:
Patient length of stay = [patient discharge date]-[patient admission date]+1
Which patients are included in length of stay calculation?
The length of stay calculation assumes that only discharged patients are considered in the calculation – since the formula expressly refers to the patient discharge date. When only discharged patients are considered (whether live discharges or discharges due to death), the hospice provider only has a backward-looking view on performance relating to length of stay. For example, if a hospice provider has been providing service to a patient for 12 months and the patient is still on service, the patient will not be included in the traditional average length of stay metric – since the patient has not yet been discharged. On the other hand, once the patient is discharged the patient’s length of stay will be at least 365 days since the patient – while still currently active – has already been on service for 365 days. If active patients are considered in a length of stay calculation, it gives a hospice provider a metric that can be used to highlight patients whose clinical charts and documentation of care may benefit from additional review.
What length of stay metrics should be calculated?
In addition to computing average and median length of stay based on discharged patients only, average and median length of stay can be computed for active patients. Patient length of stay for an active patient is calculated as follows:
Active patient length of stay = [end of evaluation period date]-[patient admission date]+1
For example, suppose the current date March 15, 2023 and a hospice wishes to calculate the active patient length of stay as of the end of 4Q 2022 for a patient who was admitted on December 1, 2022. The calculation is as follows:
- End of evaluation period date: 12/31/22
- Patient admission date: 12/1/22
- Active patient length of stay = (12/31/22) – (12/1/22) + 1 = 31 days
The active patient length of stay as of the end of 4Q 2022 is 31 days.
If the hospice wishes to calculate the active patient length of stay as of current date, the calculation is as follows:
- End of evaluation period date: 3/15/23
- Patient admission date: 12/1/22
- Active patient length of stay = (3/15/23) – (12/1/22) + 1 = 105 days
Average and median length of stay would be computed as usual. If any concerning value — such as long length of stay – is identified based upon the active patient length of stay, a hospice provider can immediately investigate and determine if any remediation action is required, rather than waiting until patients are discharged. Delay can lead to additional fines or further action from Medicare.
by editor | Mar 22, 2023 | Compliance and Regulatory - Directors, Metrics and KPIs, Rules and Regulations - Nurses, Rules and Regulations - Office Team
Patients are eligible for hospice if they have a terminal diagnosis and a prognosis of six or fewer months to live if their disease runs its natural course. A patient who lives longer than six months can still get hospice care if the medical director or other hospice physician recertifies that the patient is still terminally ill.
What is hospice patient length of stay?
Hospice length of stay is an important metric that is monitored by both CMS and by hospice providers. Hospice length of stay measures the count of days that a patient receives hospice services, from the day that the patient is admitted into hospice until the day the patient is discharged (either alive or deceased). In 2018, 25% of Medicare beneficiaries received hospice care for seven days or less and 54% of Medicare beneficiaries received hospice care for 30 days or less.
Why should a hospice monitor patient length of stay?
Monitoring patient length of stay can aid in detecting cases of possible fraud or abuse – instances where ineligible patients continue to receive the hospice benefit. This metric also helps monitor whether the hospice benefit is being adequately utilized. Although patients are eligible for hospice when they have six months or less to live, most patients receive less than 30 days of hospice care.
Agency patient length of stay is also trended over time and is also compared against the value for patients in the same region, state, or nationwide. The metric may also be analyzed for patients in subpopulations – for example patients with the same disease, race, or ethnicity.
How is patient length of stay calculated?
Patient length of stay is calculated using all patients discharged by the hospice provider during the reporting period. For example, if the hospice would like to compute the length of stay for patients during the 4Q 2022, all patients who were discharged during 1Q 2023 would be included in the calculation. For each patient, the number of days from the date of patient admission until the date of patient discharge is counted; this represents the patient length of stay.
Patient length of stay = [patient discharge date]-[patient admission date]+1
What are common measures of length of stay?
Two common patient hospice length of stay measures are Average Length of Stay (ALOS) and Median Length of Stay (MLOS).
Average length of stay
Average length of stay is the arithmetic mean of the data collected. Specifically, if d is patient length of stay and N is the total number of patients then average length of stay (ALOS) is calculated as follows:
ALOS = ( d1 + d2 + d3 + …. + dn ) /N
Where di = patient length of stay for patient i
Median length of stay
Median length of stay is the middle number in the sequence of numbers. Specifically, compute the length of stay for all N patients. Then, order these N numbers in ascending order. The middle number is the median. If the number of patients is even then there is no middle number. Instead, the median is calculated by taking the average of the two numbers in the middle.
Comparing average and median length of stay
The average is sensitive to outliers in the data. That is, if there are a few patients with a very high length of stay while all other patients have a significantly lower length of stay, the average will be biased by these outliers and will give a misleading assessment of overall patient length of stay. Below, we give an example to provide greater intuition into the impact of outliers on average length of stay and the difference between mean and median length of stay.
Suppose a hospice agency discharged 35 patients during 4Q 2022. The patients’ lengths of stay are as follows:
We compute the average length of stay by summing each of the 35 patient’s length of stay (in the “Length of Stay” column) and dividing that total by 35 (the total count of patients).
Average length of stay (ALOS) = 38.5
We compute the median length of stay by sorting the patient’s length of stay in ascending order and identifying the central number. Since there is an odd number of patients, there will be a single central value. In this case, the central value is 20.
Median length of stay (MLOS) = 20
Average length of stay is almost double the median length of stay. What is leading to these significant differences between ALOS and MLOS? Observe the outliers in the data. There are two patients with length of stay that exceeds 200 days. There are two additional patients with length of stay exceeding 100 days. Since ALOS is sensitive to outliers, ALOS is being pulled to a higher value due to the presence of these outliers.
To provide additional insight, we have plotted a histogram of the length of stay values. A histogram shows the count of observations in the data that fall in each of the specified ranges.
The table on the left shows the count (frequency) of observations of patient length of stay in the data for each of the ranges: 0-10 days, 10-20 days, 20-30 days, 30-40 days, and greater than 40 days. There are 11 patients with length of stay between 0-10 days, 7 patients with length of stay between 10-20 days, 6 patients with length of stay between 20-30 days, 6 patients with length of stay between 30-40 days, and 4 patients with length of stay that exceeds 40 days.
Think about this histogram and now consider the MLOS and ALOS. Median length of stay is 20 days – it falls well in the middle of the data. Average length of stay, however, equals 38.5. It falls, essentially, in the final bar of this histogram and well beyond where the majority of the data lies. The provides a visual demonstration of the impact of outliers on ALOS.
Providers should monitor both ALOS and MLOS. Significant differences between these numbers would indicate the presence of outliers and should be investigated.
Print ‘n take hospice keys
- Understanding the difference between the average (mean) and the median
hospiceKeys-meanVsMedian
Where can you find out more?
