Could hospice be a hopeful word

Could hospice be a hopeful word

by | Mar 23, 2024 | Keys to Compassionate Care

Outside my office door right now, a group is meeting and discussing what they miss about their loved ones. There is a reality that everyone dies and that everyone who has ever loved will grieve. So if that is the inevitable, how is hospice shifting the way we treat the dying days?  The mere mention of the word “hospice” can evoke fear and discomfort in many individuals. Often misunderstood, hospice care is a critical and compassionate approach to end-of-life care that prioritizes the physical, emotional, and spiritual well-being of patients and their families. In this blog, we aim to dispel common misconceptions and shed light on the true essence of hospice care. 

Hospice does not hasten death:

Hospice care does not aim to hasten or postpone death. Instead, it provides comprehensive support to enhance the quality of life during the natural progression of a terminal illness. The focus on comfort and symptom management helps patients experience a peaceful and dignified end-of-life journey.

Hospice is about living fully until the end:

What if you knew you only had days to live? Would you treasure that time? Contrary to the belief that hospice care is a place where people go to die, it is fundamentally about helping individuals live their remaining days to the fullest extent possible. Hospice professionals work collaboratively with patients and their families to manage symptoms, control pain, and promote emotional well-being, enabling patients to cherish meaningful moments with loved ones.

Individualized care plans:

Hospice care is highly individualized, tailored to meet the unique needs and preferences of each patient. It is not a one-size-fits-all approach but rather a comprehensive plan that addresses the physical, emotional, and spiritual aspects of end-of-life care. This personalized approach ensures that patients receive the support and comfort that aligns with their values and goals.

Family-centered support:

Hospice care extends beyond the patient to embrace their family members. The focus is on creating a supportive environment that helps families navigate the complexities of terminal illness, providing counseling, education, and practical assistance. The goal is to empower families to cope with the emotional challenges they may face during this difficult time.

Dignity and comfort are priorities:

Maintaining a patient’s dignity and ensuring their comfort are at the core of hospice care. The interdisciplinary team, which may include physicians, nurses, social workers, chaplains, and volunteers, collaborates to address the physical, emotional, and spiritual needs of the patient. This holistic approach fosters an atmosphere of respect and compassion.

In dispelling the fear surrounding the word “hospice,” it is crucial to recognize the compassionate and person-centered nature of hospice care. By understanding that hospice is about celebrating life, providing comfort, and supporting families, we can shift the narrative and encourage open conversations about end-of-life care. Choosing hospice is not a surrender but a decision to embrace a holistic and dignified approach to the final chapter of life’s journey.

Anticipatory Grief: Coping with Loss Before It Happens

Anticipatory Grief: Coping with Loss Before It Happens

by | 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.

What is grief?

What is grief?

by | 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.

End-of-Life Pain Management

End-of-Life Pain Management

by | 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?

What is the Hospice Special Focus Program?

What is the Hospice Special Focus Program?

by | Feb 14, 2024 | Compliance and Regulatory - Directors, Regulatory Compliance

The hospice Special Focus Program (SFP) is conducted by the Center for Medicare and Medicaid Services (CMS). The objective of this program is to identify poor performing hospice agencies, based upon quality indicators, that place hospice beneficiaries at risk. These hospice agencies will then be subject to additional scrutiny and oversight to ensure that they meet Medicare requirements. The SFP is designed to either bring these programs into compliance or force them out of the Medicare program by terminating their Medicare status.

What is the origin of the Special Focus Program?

The hospice Special Focus Program was mandated in the Consolidated Appropriations Act of 2021. That is also when it was clarified that hospices would be surveyed every three years. All hospices now have had a survey since 2021. Some of that data is being used for the hospice Special Focus Program, which is designed to identify the worst performing hospices and either bring them into compliance or force them out of the program by terminating their Medicare status.

How is a hospice agency selected for inclusion in the Special Focus Program?

CMS uses an algorithm to identify the poor performing hospice agencies to include in the SFP. The algorithm combines data from a few data sources to score each of the hospice agencies. The score is based on data from: condition-level deficiencies in standard surveys, substantiated complaints, Hospice Care Index (HCI), and the CAHPS survey.  The algorithm does not stratify hospice agency based upon size or location; all hospice agencies are held to the same standard regardless of their size or location. The bottom 10% ranked hospice agencies (which are the hospice agencies with the highest algorithm score) are selected to be included in to the SFP. 

What is the impact of a hospice agency being included in the SFP?

Hospice agencies that are included in the SFP will be publicly reported on the SFP website.  SFP is a framework for increased oversight. The hospice agencies that are included in the SFP program will be surveyed more frequently — at least every six months.  CMS will determine what actions must be taken based upon the survey results.

How will a hospice agency exit the SFP?

A hospice will complete the SFP if in an 18-month time frame the hospice agency has no Quality of Care condition level deficiencies or immediate jeopardies for any two six month SFP surveys and has no pending complaints or have returned to substantial compliance with all requirements. The hospice will receive a letter from CMS that will indicate official completion of the program. If a hospice is unable to meet the completion criteria – due to inability to successfully pass surveys or continued complaints while on the SFP – it will be placed on the Medicare termination track.

Even as hospices work to improve their levels of quality and compliance, there will always be hospice agencies that fall in the lowest 10% of performance relative to their peers. Only by continually monitoring their quality performance and comparing these quality scores to peer performance can a hospice agency stay out of the lower 10% and off of the SFP list.

Where can you find out more?

Hospice Special Focus Program – CMS