Choosing the Right Hospice
The most challenging reality any of us will have to deal with is death and dying. Not only is witnessing the physical, mental, and emotional degradation of ourselves or a loved one a devastating challenge in itself, but navigating the systems of support surrounding end-of-life care can also be complicated.
Many families turn to hospice care in the late stages of a life-ending illness. Unlike traditional treatment, hospice care doesn’t treat a disease outright but focuses more closely on symptom management, patient comfort, and emotional support for a patient and their families. Typically, hospice care becomes an option within the final six months of life. However, one misconception surrounding hospice care is that it means “giving up”; hospice care’s primary focus is maximizing quality of life in a person’s final days when traditional treatment of a life-ending disease has proven ineffective.
In this piece, we’re going to cover some of the basics of hospice care: how to know if it’s the right option for you, the different types of care available, benefits of hospice care, and some of the financial implications.
How Do I Know if Hospice Care Is the Right Decision?
The decision to move to hospice care is difficult, and it will be entirely individualistic for a patient’s specific circumstances. Typically, hospice care is turned to when a patient has been given six months or less to live, a diagnosis that is sanctioned by a physician. Often the decision to start hospice care is delayed because, well, it’s an unimaginable reality to confront. Because the decision has such existential implications, family members or patients frequently hold off on making it.
Some indicators can help guide the decision to turn to hospice care. If a patient sees a rapid decline in health and is not responding to treatments, if there’s an increase in falls, if hospital admissions and emergency room visits become increasingly more frequent —all of these instances indicate that you should consider hospice care.
Pro Tip: One thing to remember is that hospice care is not a final decision. If a cancer patient forgoes further treatment and enters hospice care, but circumstances change, there is no rule saying that they can’t begin cancer treatment again.
The truth is turning to hospice care requires hard conversations among family members, patients, and physicians. The most important thing to remember is the ultimate goal: managing symptoms and raising the quality of life in a patient’s final months. Turning to hospice earlier than later, no matter how difficult the decision may be, can work to increase comfort and quality of life as a patient nears the end. Hospice care can be a great source of dignity for a terminal patient and a means of coping for patients and loved ones alike.
The Types of Hospice Care
Hospice care isn’t one specific branch of healthcare; rather, it’s an interdisciplinary collection of physical, emotional, and spiritual services that work in tandem to treat terminal patients. There are four types of hospice care, and all of them focus on different stages of a patient’s needs.
The first level of hospice care is in-home hospice, which means that hospice staff (nurses, physicians, emotional health, and spiritual guides) will come to a patient’s home to provide care. This type of hospice care is typically used in the early stages of hospice, helping patients transition from a hospital to their homes. In many cases, in-home care is used in conjunction with telemedicine to answer questions and medical staff dispatched based on a patient’s needs. In-home hospice can also include medical equipment brought to a patient’s home to provide the highest-quality care possible.
The second level of hospice care is continuous care, which is in-home care with 24/7 support. With constant care, a patient has a member of hospice staff on hand at all times to help assist in symptom management. This can be everything from persistent pain to trouble breathing, nausea, and vomiting that doesn’t subside. Frequently caregivers turn to continuous care when symptoms become more than they can handle themselves and require trained staff on hand 24/7 for expert assistance and guidance.
The third level of hospice care is in-patient hospice care. While it’s never a patient’s first choice to be in a hospital, away from the comfort of their home, there are times when symptoms become too much to manage even by continuous in-home care. In-patient hospice allows a patient to be observed by nurses and physicians around the clock, ready at a moment’s notice to treat advanced symptoms and offer expert insights and care. In-patient hospice facilities tend to be calmer and more “home-like” than regular hospital visits to replicate a familiar setting’s comfort.
The fourth and final level of hospice care is respite care. Respite care exists as a sort of hybrid between in-patient and in-home or continuous home care. The point of respite care is primarily to offer relief to caregivers. Especially for those with no medical background, becoming a primary caregiver to a hospice patient can be too taxing and physically and emotionally draining. Respite care allows caregivers relief from the responsibility of having a hospice patient in their care for as many as five days and nights to recharge.
How Does Hospice Care Work?
As we mentioned, hospice care is an interdisciplinary field and can take on many forms depending on the unique needs of the patient. Broadly speaking, a caregiver (or the patient) works with a hospice team leader to develop a plan based on the services the hospice care provider offers.
From there, a hospice team carries out the plan. Hospice care is not geared towards treating diseases themselves; rather, it’s about treating symptoms, raising the quality of life in a patient’s final months. This treatment of symptoms is known as palliative care. When palliative care is used interchangeably with hospice care, palliative care is merely one aspect of the overall hospice care landscape.
Beyond palliative care, there are several members of a hospice team, each with a different focus. Hospice care teams can include physicians, specialists, nurses, clergy, social workers, therapists, volunteer staff, and more. Each hospice care team will be unique to the patient, but they all have a singular focus on comfort and quality of life.
Selecting the Right Hospice Care Team
Choosing the right facility or team to provide hospice care can present some serious challenges because these professionals could be the ones to care for your loved one in their final moments. There are some questions to ask and considerations to make when choosing a hospice care provider. First and foremost is looking at the reputation and history of a practice or facility. If you know someone you trust with recommendations for hospice care, then this is a great place to start. Likewise, a hospice care provider with a decades-long track record of success can give you peace of mind knowing your loved one is in good hands.
It’s also essential to confirm certifications, licensing, and credentials for anyone caring for the patient. Additionally, it’s necessary to verify that the patient will be covered by whatever type of health plan you intend to use for care.
Note: Some hospice care facilities don’t employ their own in-home care staff. When you’re determining the right hospice care provider for your loved one, ensure that all staff, both internal and external, are reputable and certified.
Finally, it’s essential to understand the full range of services a hospice care provider is offering. Some things to look out for:
- Will they create an individualized plan for your loved one?
- Do they offer all four levels of hospice care?
- Will their staff train caregivers on how to use in-home care machines?
- What hours do they offer in-home visits?
- Do they have 24/7 telemedicine support to answer questions?
- Are there additional services offered, such as massage or music therapy?
- Does their staff cater to specific populations, including language support?
Paying for Hospice Care
When you stack up the number of services provided through hospice care and even having a cursory knowledge of the American healthcare system, it can seem prohibitively expensive. Again, everyone’s financial and insurance circumstances will be different, but there are a few common ways to pay for hospice care.
Both Medicare and Medicaid offer coverage to help pay for hospice care. More than 90 percent of all hospice care coverage is provided through one of these sources. What’s more, the care provided under these two programs can be surprisingly robust and at relatively low costs. Additionally, the Department of Veterans Affairs via Tricare and private insurers offer hospice care coverage.
For those that don’t have insurance, some hospice care providers work on a sliding scale or pro bono, offering specific services for free or subsidized prices. Financial assistance can be allocated at certain facilities based on donations, grants, gifts, or other community resources. Services like the Hospice Care Network in New York offer donation-backed, non-profit hospice care, for example.
The Benefits of Hospice Care
The conversations surrounding hospice care are difficult to have. Still, they’re essential to understanding a physician or medical team’s perspective while also addressing both the patient and their caregivers’ comfort level. Entering hospice care is a decision that can’t be taken lightly, but when discussed with openness and honesty, it can be the first stage in a family’s collective grieving process.
End-of-life care comes with a range of benefits because it works to heal the body and takes a holistic view of dying. On the physical front, hospice care is focused on comfort and quality of life, aiming to make a patient’s final months as dignified and fulfilling as possible. Emotionally and spiritually, hospice care can help patients and their families cope with death’s inevitability with grace and understanding. By beginning the acceptance process months before a person passes, family members can appreciate the time they have with their loved ones instead of focusing purely on the medical treatments and efficacy rates they could see for the patient.
The decision to put a loved one into hospice care will be one of the hardest any of us make. The critical thing to remember is that it’s a decision that represents the first step in the healing process and a vehicle for our loved ones to live their final days in peace, dignity, and comfort.
Frequently Asked Questions About Hospice Care
- Is hospice for the dying only?
Hospice care is primarily for patients with a prognosis of a life expectancy of fewer than six months. While that could be interpreted as “dying,” some patients do live beyond their hospice stay expectancy. Hospice care does typically refer to care given to terminally ill patients, however.
- How long does a person live after being put on hospice?
While hospice care is primarily for those with a prognosis of six months or fewer to live, there are patients who live longer than their expectancy and some that recover enough to resume treatment for potentially life-ending diseases.
- What is the difference between palliative care and hospice care?
Palliative care is the treatment of symptoms rather than the treatment of the disease itself. Palliative care is one aspect of hospice care. Still, hospice care is a broader collection of interdisciplinary medicine that also includes other types of medical care in addition to psychological and spiritual counseling.
- Can a person be on hospice for years?
Hospice care, as defined by the parameters of Medicare and Medicaid (the two largest insurers of hospice care), is meant to last for the final six months of a person’s life. While a patient can be on hospice care for longer, typically someone in hospice beyond six months will be released to other treatments (though they may return to hospice later).
- How long does the average hospice patient live?
In 2018, the average hospice patient lived 78 days, up from a 75-day average in 2017.