I spent 4 years working as a hospice social worker, which was an invaluable experience for me. I spent most of my time with hospice care in long-term care facilities. Hospice patients can receive care in any setting that they reside in. Many hospice patients receive hospice services in their homes, others at in-patient hospice facilities, and still others in assisted living or nursing care facilities. I was fortunate enough to work with a wonderful network of facilities that by and large took very good care of their patients. This is unfortunately not always the case, and because the goal of hospice care is to ensure the comfort of the patient, hospice services can be a wonderful addition to the care of the patient, but hospice care is not for everyone. There are some important considerations to think about if you have a family member or loved one that may benefit from hospice services. Overall you want to make sure that you know what hospice care is all about, who qualifies for hospice services, and when the right time is to ask about hospice services.
What Is Hospice For?
First and foremost, hospice care is about ensuring the comfort of a patient who has a terminally ill condition. Hospice is not intended to provide aggressive treatment, and thus if someone has a medical condition that they are pursuing treatment for, such as chemotherapy or other cancer treatments, they wouldn’t be appropriate for hospice services while they are in treatment. Hospice comes in to help ensure that patients who are approaching death but who are no longer pursuing treatments for their conditions are comfortable and are able to pass away peacefully under the conditions that are closest to the wishes of the patient and family. A nurse will regularly evaluate the patient’s needs and condition, a doctor will oversee the care of the patient, and the hospice care organization will provide most of the patient’s care and supplies needed. This means that a hospice care team will typically provide any pain medications needed to keep the patient comfortable, medical equipment like hospital beds, and hygiene care supplies like shower seats or incontinence supplies. They can also provide hygiene related care, such as CNA assistance with bathing and changing clothing. A hospice team will also usually include a social worker to support the patient and family emotionally and help advocate for the patient’s needs, and a chaplain to provide spiritual support to the family if desired. These services are provided in addition to care that the patient may already be receiving from family members or the staff in an inpatient or nursing care facility. There is a wide range of options for care, based on how much support a patient has and what their own capabilities are as they begin to decline.
Who Pays for Hospice?
Hospice services are primarily funded by Medicare, which means that most patients who need hospice care qualify under Medicare’s definitions. Many community-based hospices have other donors and funders who help to fill in the gaps for funding needs. In order to qualify for hospice services, a doctor needs to certify that the patient’s prognosis for a terminal condition is 6 months or less. Typically, this will be done by the doctor at the hospice organization based on their evaluation of the patient’s condition and prognosis. Hospice services can generally step in and provide support to the patient and family once the patient and family have decided to stop aggressive treatment of their terminal condition and focus on comfort care.
It is important to note that Medicare and Medicaid are different and pay for different things when it comes to end of life care. Medicare is not the funder when it comes to nursing home care. For example, if a person is no longer able to be cared for in their own home, and they need to go into a nursing care facility due to their level of care needs, Medicare does NOT pay for this. Each patient is responsible for paying their own room and board expenses in a nursing care facility. This is why there is a HUGE disparity in the type of accommodations people receive in nursing care or assisted living facilities. Just like with private housing, you will be able to get into a much nicer facility if you have the money to pay for it, and nursing home care can cost upwards of $10,000 a month or more. However, Medicaid DOES pay for nursing home services, but you must qualify for Medicaid in order to receive that benefit. This means that you will either be indigent, or you will have already spent all or most of your money on your own care before Medicaid will kick in and start paying for nursing home care. Again though, just because Medicaid is paying for the nursing home care, doesn’t mean that you can go to any nursing care facility you want. Most of those really nice facilities that cost $10,000 + a month are going to be private facilities that do not accept Medicaid. Therefore, if Medicaid is the only option to pay for care, the patient will only be able to get into a facility that accepts Medicaid for payment. This is not to say that facilities who accept Medicaid give poor care. There is just going to be some variations in the quality of care you receive no matter who is paying for the care. I have been to facilities who reserved some beds for Medicaid patients and the rest were for private pay, but it just depends on the facility.
When is it Time for Hospice Care?
There are many reasons why a patient and family may choose to stop treatment, and every circumstance is unique. In my particular experience, I worked with a lot of patients who were elderly and had been in nursing care for quite a while, and their health was more rapidly declining. Some of my patients had been living with dementia, ALS, heart disease, or COPD for years, and they and their families were tired of taking medication and going to therapies and struggling to complete everyday tasks. Many of them were ready to die, and just wanted to be comfortable and spend time with their families before they passed away. Often it was harder on the families who were losing a loved one and experiencing grief than it was for the patients themselves. Many were just tired. Tired of fighting, tired of struggling.
This was not always the case. When someone is dying of cancer in their 40’s, it’s not the same as someone who is dying of heart disease in their 90’s. Every patient’s circumstances are unique and thus so is their outlook. As human beings we tend to have an easier time accepting that a very elderly person who has been suffering for years with their decline is ready to come to the end of their life than it is to accept that a person in the middle of their life who still has young children at home will not recover from their illness. This of course, also will be much different for a family who is facing the impending death of their own child due to a terminal condition. Even the parents of terminally ill children sometimes have to make the decision that ongoing treatment may cause more harm than good in the quality of the remaining life of their child. No one can decide for a patient and their family when the right time to stop treatment and move into hospice care is. That decision needs to be made by the patient, to the extent that are able to communicate their wishes, or by their health care surrogate, who should be given all the information and options available in order to make an informed decision about the best care for the patient moving forward.
Hospice care workers are a special class of caregivers. I was endlessly impressed with the compassion and fortitude of the nurses, doctors, social workers, chaplains, and CNAs that I worked with during my employment in hospice care. When the time is right, and the patient and family have decided that comfort care is the top priority, hospice can be an amazing asset. If your family is considering hospice care for a loved one with a terminally ill condition, think about what your goals are at this time in their care plan, and reach out to the hospice providers in your area to learn more about their particular services and your options for care.