At the end of the series of centers and homes for dementia patients is something called hospice.Hospice assures a sense of comfort in a time that would otherwise bring both stress and heartbreak. Although your heart may still ache, you as a loved one of the patient may remain at peace knowing that the person you were there for left in peace.
More than a place, hospice is a unique kind of care for people with advanced illnesses and their families. It is a specialized form of care that accepts that life eventually ends. It does not accelerate nor postpone death. Instead, it concentrates on giving dying individual a good and dignified end.
Over 90% of the hospice care is given at home by the family and/or a nurse or a doctor. These professionals follow certain conditions and make sure the person has the best quality of life possible, given the situation.
Hospice Care vs. Palliative Care
Hospice and palliative care have a lot in common. Both types of care are designed for the same purpose: to help someone who has an advanced or terminal illness have a good, dignified and pain-free time before the end. However, there are also some distinct differences:
- LOCATION: 90% of hospice care occurs at home, while a nearly the same percentage of palliative care occurs in a hospital or health center extension unit.
- TIMELINE: To receive hospice care, a person must be in their final months of life. However, to receive palliative care, the time window is a lot bigger and can include not only individuals who have a terminal illness, but also illnesses that have no known cure.
- INSURANCE: Most hospice care services may be contemplated with assurance. Many of them are even founded by Medicare. Costs are usually considered all-in-one. In palliative care—except for in certain cases or institutions—costs are usually presented separately. This results in a situation where each item billed will have to be contemplated by the insurance provider before an approval is given.
The Number of People
Although hospice and palliative care is often mistaken, numbers show that there are more hospice care agencies than expected. These agencies help about 1.3 million US citizens to get the necessary hospice care. About 47% of these people were individuals with Alzheimer’s or another form of dementia.
The Number of Agencies
Since 1974, when the first hospice program opened, the number of programs across the country has increased dramatically. In the US alone, according to data from 2014, there were 4000 hospice agencies and about the same number of facilities.
Hospice care at home or other care facilities means the patient has 1:1 care from their hospice team. Once on hospice, the individual has all attention on them, ensuring they have the appropriate comfort measures they need.
Although there are many hospices across the United States, the ratio of facilities to the number of patients varies a lot over different states. For example, in Alaska, the ratio is 14.49 facilities per 100,000 residents. On the other end of the spectrum, Iowa has 2.73 facilities per 100.000 residents.
Hospice is an excellent fit when a person is terminally ill and wishes to have the best quality of life possible during the remaining months of their life, either in their own home, at a family member’s home or another type of care arrangement such as assisted living or nursing home. Normally terminal diseases bring along unwanted symptoms. The purpose of this type of care is to treat those symptoms, not necessarily the disease.
Depending on the agency or facility you go through, the services provided may vary. Typically, these are some of the services that you may find:
- HOSPICE COMES TO THE PATIENT: Many terminally ill individuals prefer to remain at home for the remainder of their time. Therefore, this service will provide one or more healthcare professionals to deal with all the palliative issues at the person’s residence itself. In cases where the person is in a care home such as assisted living, personal care home or nursing home - hospice will still cater directly to them wherever they are to provide the needed services.
- DIRECT LINE TO PHYSICIAN: Once on hospice, the individual receives medical attention from their hospice team. In case of an emergency or if there is a medicinal change, they are able to assess the patient and prescribe the required treatment at their home. This streamlined and personal attention to a patients medical needs is unparalleled to all other forms of care besides being in a hospital.
- CONDITION-SPECIFIC CARE: This service is tailored to care for individuals with specific illnesses. It takes into account the illness and accordingly provides customized service that is best suited to each person. If a patient needs to be visited frequently, hospice accommodates and coordinates for caregivers to provide the needed visits at home.
- HOME MEDICAL EQUIPMENT & SUPPLIES: Hospice may cover medical equipment such as hospital beds, wheelchairs or walkers. It may also cover medical supplies such as bandages, diapers, wet wipes, and catheters.
- SOCIAL WORKER: Social workers are typically part of the team assigned to a patient once they are on hospice. With their help, they offer resources and advice for the patient and their family to help them make decisions during the difficult time. They can also assist with transitioning into different care arrangements or finding a new personal care home, assisted living, or nursing home.
- GRIEF COUNSELORS: Emotional and spiritual counseling to help the patient and family with grief and loss may be part of the services provided by hospice. Make sure to ask the agency if this is a dire need for you or your family.
- PHYSICAL, OCCUPATIONAL & MUSIC THERAPY: If necessary, hospice can provide therapies that may assist the patient in their final times. Speech therapy may also be available to help with problems such as swallowing.
Normally, these services are provided on a daily basis, depending on the illness, the person’s needs and the caretaker. With this type of care, it is imperative that the physician works in tandem with the rest of the staff to ensure that key aspects of the care regimen such as medication management is done as seamlessly as possibly. In addition, it is very important for the patient to be kept in as comfortable a situation as possible.
To enter a hospice care program, a person must have an illness where they are close to the end of their life. A person will be considered eligible for hospice care when a doctor estimates that the patient has 6 months or less to live. The doctor must refer the patient to hospice if they see it is fit.
The first step in a situation like this would be to consider the matter thoroughly before making a decision. Sometimes the patient might feel that the caretaker or family is giving up on them. However, it should be emphasized to both the patient and their loved ones that hospice care is intended to help the ill individual live out their last moments stress- and pain-free.
Once the decision is made, the next step would be to consult with doctors, nurses or some other healthcare professional and ask about how hospice care works. You should also ask about agencies that they can recommend, giving you a place to start.
Finally, once a referral has been given by the doctor, you must contact the agency and gather as much information as you can on all the services provided by them, the frequency of the services, payment methods, and other pertinent items. The patients doctor may have recommendations on hospice care agencies that they have worked with in the past. Read below on more options for finding a hospice agency.
- Asking the patient’s doctor about recommended agencies
- Asking family or friends who may have experience with hospice care for suggestions and insight
- Seeking information from relevant associations
- Doing searches on the internet
It’s not always easy for the person’s family to decide unanimously whether or not to get hospice care or which hospice agency to select. In these situations, to sort out the matter in an orderly fashion, you can hire an attorney. By the power of attorney, you can make sure the wishes of your loved one are honored, despite having split decisions in the family.
In most cases, people opt for hiring agencies that will deliver the care services at home—home hospice care. In that situation, the best thing to do is to ask the team of healthcare professionals about what services are more or less important and make a decision based on their opinion and your loved one’s needs.
There are some things you should have in mind if you decide to go searching online for a hospice agency. Many of the sites presented are certified and serious, having the ultimate purpose of honoring the last months of your loved one’s life. However, with the number of for-profit agencies growing, you must be very careful as there are cases where some online sides have been known for trying to fleece the person and practicing unethical methods of transaction.
Here are some websites that can be of help to start your search for the right hospice agency:
- International Association for Hospice and Palliative Care
- National Hospice and Palliative Care Organization
- Compassion and Choices
Before deciding on a hospice service or program, you should first be aware of some important aspects:
- Is the hospice care provider certified and licensed by the state or federal government?
- Does the hospice care provider train caretakers to care for your loved one at home?
- How will your doctor work with the doctor from the hospice provider?
- What is the patient to staff ratio?
- What is the frequency of meeting your loved one and your family?
- How is their after-hours emergency response?
- What insurances do they take and is your loved one's accepted?
Before entering your loved one into hospice care, the agency will have to do an evaluation on your loved one. This is to make sure that they meet the criteria for hospice care. Usually, a team of professionals will make this evaluation by considering the diagnosis and prognosis, your loved one’s needs and the services you could be interested in. This includes interviews with both the patient and their close family members. Thereafter, your loved one and/or a family member will receive a notification and, in cooperation with your loved one’s doctor, you may choose to continue with that hospice agency in particular or not.
Due to the customizability of hospice care, the cost can vary quite a bit. However, the majority of hospice care may be covered by insurance agencies.
Hospice benefit is part of Medicare coverage and is available for extended periods of time based on the assessment of the patient. When a patient chooses hospice care under Medicare, they switch from standard Medicare coverage to the Medicare Hospice Benefit. The rule is that they cannot be on both standard Medicare and Medicare Hospice Benefit. However, you can have the hospice benefit revoked and revert to the standard coverage at any time, if you choose. The benefit is divided into two 90-day certification periods and subsequent unlimited 60-day periods. The hospice’s medical director interdisciplinary team, meet every fourteen days to ensure qualification for the service and that the patient’s symptoms and needs are being met.
You should note to keep aware of when assessments are carried out incorrectly as it can lead to being wrongly charged for care. Sometimes it can end up with your loved one’s personal assets being taken away to pay for care that should be funded otherwise. Hence, it is vital to be as well informed as possible as early in the process as possible.
As in any external service, there are some potential issues that can arise with hospice care. An example is unlicensed hospice care agencies. Before choosing a hospice care agency for your loved one, you should thoroughly check their licensing status and ensure that they comply with state or federal licensing standards. You should also make note to check on their licensing status periodically once your loved one has entered into their care as it can sometimes be revoked for a variety of reasons.
Another problem may be errors in medication management. The purpose of hospice care is to give your loved one the best final moments possible. This of course includes administrating the correct medication in order to relieve pain and other symptoms. You should always be careful and try to understand if your loved one receives the medication on time and, mainly, if it is the right medication. If you detect your loved one is under or over medicated, you should talk to the carer and your loved one’s physician as soon as possible.
Below are some important highlights that you should be aware of regarding liability and potential legal issues that you might encounter with hospice care:
- Hospices must provide adequate nursing care to meet the needs of the patient.
- If your loved one is in a hospice facility, according to the law, the hospice must provide adequate staff to keep all patients clean, well-groomed, and protected from accidents, injury or infection, and to provide all the care needed to meet your loved one's needs.
- Some hospices make it a practice to use a crisis in order to illegally manipulate patients into using the hospice's own inpatient facility where they collect more money for room and board—this is not obligatory and depends on the patient’s wishes.
- Hospices must provide adequate home health aide and homemaker services to meet the needs of the patients—note aides are not trained for every situation possible, a healthcare professional might be needed after some point.
- Home health aides are not trained in the use of medications, they do not have the knowledge base to properly assess a patient, determine when a medication may need to be adjusted in dosage or if it is ineffective. There may be situations when an aide is sent instead of a healthcare professional in order to save money but you should assess the situation and react accordingly to ensure that your loved one receives the necessary care.
Filing Complaint to Hospice Care Management
Usually, if you have an issue that needs to be addressed regarding the hospice care’s services, the first point of contact will be the management itself. Whether it is a small matter of preference, staff matters, or more serious issues of improper care, you can bring it to the attention of the hospice care management. The management in turn should have an established procedure for investigating and handling complaints in an effective manner. When filling a complaint about hospice care you should include the following information:
- Your full name, address and phone number—where you can be reached during the day.
- The date along with the Certified Mail Number given to you by the U.S. Post Office.
- The address for your State's Div. of Licensing and Certification (Complaint Division)
- The complete/full name of your loved one who is or was in hospice care, along with the hospice's own medical record/case number and the date your loved one was admitted.
- The type of terminal illness involved.
- The names and titles/profession of the hospice managers or staff who failed to make sure proper care was given to your loved one. (If you believe that the hospice staff themselves sincerely tried to provide appropriate care, but were not allowed to do so by the hospice management, explain that in your complaint letter).
- The dates, times and circumstances when the hospice failed to provide adequate care or symptom management, etc.
- List each type of problem separately and number the problems. (This will assist the State surveyors who read your report in clearly understanding what occurred and what to look for).
Example: If there are 3 problems that you wish to highlight, state that you are reporting 3 different problems and then list them by number.
- Be specific:
- Indicate the exact date and shift if you are discussing an incident specific matter.
- If the care was poor throughout the time period your loved one was being cared for, state that and explain what you believe was wrong with the care provided.
- It is extremely helpful if you review the federal laws and use specific terms.
In general, the complaint pathway should look something like this:
- Case manager
- The hospice director and/or medical director
- State licensing division which inspects the hospice
- Joint Commission on Accreditation of Healthcare Organizations ("The Joint Commission" for short) if the hospice is accredited
Note: The last two organizations should be made aware in the case of unresponsiveness from the hospice’s part
Remember, if you feel things are not going the way they should or that your complaint is not being handled appropriately, you can bring it to a higher level of authority as indicated above.