Having a loved one struggling with a terminal illness will take its toll even on the most healthy individual. It’s even more difficult when you know your loved one only has a few months to live. Sometimes, you and your family may find yourselves in unfamiliar territory with your loved one’s health.
During the last stages of a terminal illness, some medical treatments may fail to have the desired effect, or your loved one may choose not to undertake the available curative treatment options.
As a family, you will need to be prepared for any eventuality. You will need to understand the various available options that will ensure your loved one is comfortable and retains their dignity up to their last breath.
Hospice care addresses a patient’s physical, mental, spiritual, social, and emotional well-being. A hospice care team uses a holistic approach to ensure your loved one’s quality of life as they near the end.
What is Hospice Care?
Hospice care is holistic care that is ideal for patients:
- Whose life expectancy doesn’t exceed six months.
- When curative treatment is no longer a viable option
- When a patient’s treatment focus shifts from curative or symptom-managed to improving the quality of their lives.
Purpose and Goals of Hospice Care
The purpose and goals of hospice care don’t change with a patient’s setting. It doesn’t matter if your loved one is homebound, in a hospital, assisted living home, or at a hospice care facility.
The goal of the hospice program is to:
- Relieve your loved one’s pain.
- To ensure your loved one’s comfort in their last days.
- To help you and your family come to terms with your loved one’s condition and what to expect as their condition deteriorates
- To provide you and your loved one with relevant information regarding their medical condition
- To help you and your loved ones search for meaning in your lives.
Importance of Hospice Care For Families
As a family, coming to terms with your loved one’s imminent demise can be a hard pill to swallow. You want to do everything you can to ensure they are treated and, if possible, lengthen their lifespan.
Sometimes, this may be impossible, and the hospice care team will help you better understand your loved one’s condition and prepare for when they will no longer be there with you.
The hospice care team will help you with research and support as you watch your loved one during their last days. They will also help you plan for the future and answer any questions.
Who is Hospice Care Intended for?
Hospice care is intended for patients who wish to stop curative treatment, and their doctors believe they have six months or less to live with their illness running its natural course.
Criteria for Eligibility for Hospice Care
You and your loved one will benefit from hospice care when their hospice doctor determines if they are eligible for hospice care promptly. A hospice program allows families to have ample time to come to terms with the imminent death of their loved one.
Additionally, your loved one will increase their chances of receiving compassionate care during the last stage of their illness.
The following guidelines will help you know if your loved one is eligible for hospice services:
- Your loved one has a terminal illness, and their doctor gives them a prognosis that doesn’t exceed six months
- Your loved one has a deteriorating functional status.
- Your loved one requires assistance in managing more than half of their activities of Daily living (ADLs)
- Your loved one has lost more than 10% of their body weight in the last 6 months
- Your loved one’s medical condition deteriorates in the last 4 to 6 months.
- A decrease in their cognitive abilities
Benefits of Early Hospice Care Planning
Early hospice care planning is essential in a patient’s life as it positively affects their lives. When a patient starts hospice care early, they will benefit from the following:
- Have enough time to plan on what they want done after they pass on
- The hospice care team will help them with proper symptom management
- Ample emotional, mental, and spiritual support
- Access to resources and materials
- Reduced hospitalizations
Services Provided by Hospice Care
Hospice care helps a patient with easy access to the following services.
- Spiritual counseling
- Frequent healthcare professional visits
- Routine medical evaluation and assessment
- Volunteers services
- Respite care
- Advanced care planning
- Social workers evaluation
- Availability of specialized care from additional health professionals, therapists, pharmacists, dieticians, and home health aides.
Common Misconceptions About Hospice Care
According to The Hospice Foundation of America, hospice care focuses on helping terminal illness patients live comfortably as long as possible. A team of highly skilled professionals will work together to address a patient’s physical, emotional, mental, spiritual, and spiritual needs.
Unfortunately, several misconceptions may create a stigma around hospice care. This stigma may make it difficult for you and your loved one to start and continue with a hospice program.
One thing to note is that hospice care does not fit all patients. You need to find out if it’s the best option for your loved one. To learn if it’s the ideal option for your loved one, you must know what it is and what to expect.
Some of the misconceptions facing hospice care are:
Hospice care is for patients who have given up on their lives
This misconception is very incorrect as it creates a dangerous stigma that may hinder patients from seeking hospice care.
If your loved one has these misconceptions, they may fail to receive pain relief medications, which may make their last days comfortable and pain-free.
Hospice Care is a Patient’s Final Stop
One thing you and your loved one need to understand is that hospice care isn’t a death sentence. Your loved one can leave hospice care at their discretion. All that hospice care aims at is offering comprehensive care to patients who have terminal illnesses where the possibility of a cure is almost non-existent.
When your loved one’s condition improves, they can leave the hospice program and even resume curative treatment. If your loved one leaves hospice care, they can still reapply for hospice when the need arises.
Hospice Care is For Patients Who Have Few Days Or Weeks Left
Individual cases vary in the duration of hospice care. This means your loved one may access hospice care for a short while while someone else takes longer. The Medicare report shows the average hospice length to be 76 days, but this is not definitive.
Accessing Hospice Care Means Losing Control Over Your Loved One’s Care
Although your loved one will have a hospice care team attending to them, it doesn’t mean they have no control over their care. Your loved one has a right to request different services or refuse the services offered altogether.
A Patient Requires A Doctor’s Referral To Access Hospice Care
Anyone can refer a patient for hospice care, including a spouse, other family members, and friends. To ensure eligibility for coverage, this referral must be followed by your loved one’s doctor’s order.
A Person Can Only Access Hospice Care At A Hospice Facility or The Hospital
Your loved one can access hospice care where they are more comfortable or in a setting that makes service delivery more effective. This setting can be their homes, assisted living homes, hospitals, or hospice care facilities.
Hospice Care is Expensive
You should know that hospice care is fully funded by either Medicare or Medicaid. Other private insurance companies also offer hospice care as part of their coverage.
Hospice Care Doesn’t Make Any Difference in a Patient’s Life
Hospice care helps patients with a terminal illness, and although you don’t expect to have a cure for your loved one, you want them to spend the last stage of their illness comfortable and as painless as possible. With hospice care, the quality of your loved one’s life will improve significantly, and you will have enough time to say your goodbyes. Hospice care gives you enough time to talk with your loved one and know their last wishes.
Hospice Care Settings
Your loved one can receive hospice care in a variety of settings. These include:
In-home Hospice Care
When your loved one receives hospice care from the comfort of their home, a hospice care team will provide routine care to ensure their comfort. The team will assist your loved one with their ADLs and provide emotional counseling for the family.
They would also provide education and caregiver training. For example, if your loved one has diabetes, their dietician will help you understand the types of foods they require and how to prepare them.
Hospice Care in Residential Facilities
You don’t have to worry about how your loved one will access hospice care when they reside in a residential facility as care can be provided there. Talk with the residential home and have the hospice staff liaise. Additionally, the caregivers at these residential facilities will play a crucial role in ensuring your loved one’s comfort.
Inpatient Hospice Care Services
Sometimes, you may opt for inpatient care services when your loved one’s condition deteriorates, and the hospice care team can no longer manage these symptoms from the comfort of their homes. Inpatient hospice care aims to stabilize your loved one’s symptoms and have them return home after a short while.
How to Easily Access Hospice Care for Your Loved One
Sometimes, you may want to access hospice care for your loved one but may be unaware of how to access this type of care. Sometimes, you may be afraid to raise the topic as you may be scared of your loved ones’ reactions and the stigma that comes with hospice care.
Some people may think you are giving up your loved one when all you want is for them to have the best care at their fingertips. You can initiate hospice care as a family as long as your loved one meets the eligibility criteria.
If you are considering hospice care for your loved one, the following will smoothen the process:
Discuss Hospice Care with Your family and Loved One
If your loved one is mentally cognitive, you can start by discussing hospice care with them. You can also discuss this with other family members to avoid conflict. The next step is to discuss hospice care as an option with your loved one’s healthcare providers.
Conduct your Research
After agreeing on hospice care, the next step is looking for an ideal provider. You can ask your loved one’s doctor for recommendations. You can also ask your family and friends for suggestions on a hospice care facility, mainly about their experience there.
You can also use online directories such as the one provided by the National Hospice and Palliative Care Organization (NHPCO). Be sure to check the facility’s reviews online and pay close attention to how the facility handles negative reviews.
Assess the Hospice Care Providers
After you have narrowed down some of the hospice care providers where you feel your loved one might feel at home, the next step is to assess them. You can visit the facility and see firsthand how they treat their residents. If your loved one is at home or in an assisted living home, you can ask a hospice representative to pay them a no-cost visit and evaluate them.
Admission to Hospice Program
After the hospice care representative visits and evaluations, they can authorize your loved one’s admission to their hospice program.
Choosing The Right Hospice Care Provider For Your Loved One
It can be challenging to choose the proper hospice care for your loved one. You want to make a decision that will positively affect your loved one’s life. Although there may be nothing you can do to help your loved one get treatment after a terminal illness, you can ensure they are comfortable and free from the pain that accompanies terminal illness.
This makes it crucial to choose the right hospice program that will help improve your loved one’s quality of life. The following points will significantly assist when selecting the right hospice program.
- Licensing and accreditation
- Reputation
- Communications
- The range of services they offer
- Their patient-to-team ratio
- Location
- Care continuity
- 24/7 availability
- Financial Considerations
- Spiritual or cultural considerations
- Family involvements
Cost of Hospice Care
You don’t have to worry about the cost of hospice programs, as they are covered under the Medical Hospice Benefit under Medicare or Medicaid coverage. Your loved one’s private insurance coverage can also cover them.
Comprehensive Care Team in Hospice
A comprehensive care team in a hospice program provides much-needed support during your family’s emotionally challenging time. Some of the services to expect from this program include:
- Expert pain management
- Skilled nursing care
- Spiritual and emotional support to you and your loved one
- Companionship
- Assistance with your loved ones’ ADLs
- Bereavement support
- Setting up of in-home medical care equipment.
Planning and Decision-Making in Hospice Care
Deciding on your loved one’s healthcare can be overwhelming. You will face unplanned issues that seem to crop out when you least expect them to. Caring for a terminally ill loved one will leave you dealing with complex problems that you may not be well prepared to handle.
Sometimes, you will have to decide under pressure, especially when your loved one is facing a life-threatening situation. In this case, your decision will affect your loved one’s health, and every decision will have life-altering repercussions on your loved one’s life.
The following tips may help in decision-making:
- Find out more information on the issues surrounding your decision
- Determine if what your decision hopes to achieve is possible.
- Plan accordingly
- Avoid assumptions
- Determine the aim of your decision.
Hospice Resources Resources Available
There are many hospice resources available to help you and your loved one navigate their end of life. Some are listed below:
- Disease-specific resources: here, you will find specific information on different types of diseases.
- NIH Health Information: This site offers information on different diseases, clinical trials, and drugs
- Resources for Hospice Families and Patients: You will find educational resources to help you understand your loved one’s condition. These resources aim to assist patients and their families during their difficult moments.
- Grief resources offer help, advice, and support to the family after the loss of their loved one.
- What’s your grief? This website allows you to ask any grief-related question.
- Caregiver Resources: Here, you will find resources on caregiving, tips on how to care for your loved ones even though you know they will not live longer, and information on how to take care of yourself.
Conclusion
One of the most complex decisions will be deciding to have your loved one in a hospice program. Sometimes, agreeing to hospice care may seem like you are giving up on them. But this is the best decision you can make.
A hospice program allows you and your loved one to create beautiful moments that you can cherish, gives you closures, helps them spend their last days in comfort, and lays out their wishes before they pass on.
Amy’s Eden Senior Care understands what you and your loved one are going through. We know it’s challenging to let go on both sides. Our caregivers are well-equipped to support you and your loved one during this difficult time.
We want to ensure the quality of your loved one’s life has the same quality of life as before the diagnosis. Don’t hesitate to contact us today to learn more about our end-of-life care services; we are committed to providing holistic care to you and your loved one.
