Hospice care is an option that is typically associated with an end-of-life situation. The caregivers that focus on this choice have experience working with people who have advanced illnesses that can limit their life. Hospice has the goal of improving the quality of the care received instead of prolonging a person’s life during the last phases of an incurable disease.
The philosophy of hospice care is that it accepts death as the final stage of this life. It affirms the existence of each person without trying to postpone or hasten the expected terminal outcome. Caregivers work to treat the person and their symptoms, in recognition of the fact that there are some things that medicine just cannot heal. An entire team of professionals works together to help an individual’s final days be filled with dignity and respect, making it beautiful and peaceful and exactly the way the person wants to spend it, while surrounded by the people they love. This is in contrast to being surrounded by the stark white walls of a hospital, where many patients have little to no visitors.
Several advantages and disadvantages of hospice care are worth taking into consideration when a family member may be ready to enter this stage.
List of the Advantages of Hospice Care
1. Hospice care is available 24 hours a day.
Once an individual enters hospice care, that person will receive around-the-clock attention. There are no weekends or holidays for caregivers who work in this field. Patients, their loved ones, and any personal staff that is helping the family will all have access to professionals in this situation whenever they need assistance. The nurses on the hospice team have a direct line to the doctors, and can call or text doctors for immediate orders or direction, which is a privilege that only hospice nurses have. Having this 24/7 access to the hospice team, which in turn has immediate access to doctors is one of the most effective ways to provide comfort and dignity during this time of transition.
2. Hospice care gives you more control to make decisions.
If you have ever been to a hospital with a loved one near the end of their life, then you know that there is very little control over what choices are available. Doctors may take your recommendations under consideration, but they will usually act on a DNR or other pre-defined orders while providing care. When you choose hospice as an option, then the home care gives everyone more freedom. You can choose what to serve for dinner, what to watch on TV, and even when you want to go outside for a stroll.
3. Hospice can reduce a family’s out-of-pocket expenses.
Although money is often the last consideration that families have when considering hospice care, there are some potential benefits in this category to consider. When you choose this care option for someone with an advanced illness, then the cost of medical supplies, equipment, and medications are typically lower. Medicaid, Medicare, and private insurance often cover the cost of these necessary items once a patient enters hospice care. However, this financial benefit is sometimes outweighed by the negative financial impacts of hospice care (see Disadvantages #1 and #10 below.)
4. This caregiving option puts a positive spin on death.
No one wants to contemplate the idea of death within their family. The permanent loss of someone can be an emotionally devastating experience. Although we cannot stop the dying processes with our current medical science, hospice care does create a more positive outlook on this experience. It helps families build their legacy, enjoy their last moments together, and prepare for a future where the unknowns are a little less scary.
5. It includes an interdisciplinary care team that reaches beyond traditional medicine.
Hospice care doesn’t provide another caregiver to an existing team. It is a comprehensive approach that features interdisciplinary care from a group of professionals and volunteers who work in this field. It may include social workers, chaplains, home health aides, physicians, case managers, nurses, personal caregivers for daily needs such as bathing, massage therapists, bereavement specialists, and therapists to give animal therapy and music therapy. It may offer alternative treatments such as dietary supplements, CBD oils, incense and ointments to help eliminate a lot of symptoms the traditional medical floor would never consider or administer.
Each person that joins the team is there for a specific reason. When all of the individual skills come together in a comprehensive plan, then the patient can experience a dramatic increase in their quality of life during their final days.
6. It focuses on the comfort of the individual.
When someone is ready for comfort care through a local hospice organization, then this choice can often provide an opportunity to avoid unwanted hospitalizations. It might stop painful medical treatments or procedures that would have a low rate of success anyway. The goal of the entire team is to support the wishes of the patient and the family, with personal caregivers often taking the lead when pushing toward a goal.
This benefit is the reason why most hospice care providers focus on the home environment. When people get to stay in familiar surroundings, then they often experience higher levels of peace and comfort.
7. Hospice care is not a death sentence.
Hospice care has a reputation for helping those who are dying, providing assistance with pain management and other needs so that the individual and their family can focus on spending time with each other. A study published in 2017 in the journal, Health Affairs, found that almost 20% of the people who begin receiving care through their local program are being discharged from it while still alive.
The rate of successful discharge depends on the organization. Some hospice care providers release less than 2% of their patients, while others have a rate of more than 80%. For-profit caregivers tend to have higher rates of live discharge than those providing non-profit services.
8. The medical supplies and equipment get delivered to the home.
You don’t need to worry about trying to secure the medical supplies or equipment that are necessary for hospice care at home. The attending provider will arrange for the delivery of everything that you need. That includes a bedside commode, a hospital bed, any medications that are necessary, and whatever specifics can help to provide added comfort during these sometimes difficult days.
Your hospice care provider will also send a variety of qualified staff to your home to ensure that you have everything you need to provide comfort. If you have any questions or concerns about the equipment, then the agency has someone available at any time to respond to a call for help.
9. You can receive non-medical assistance with hospice care.
Many hospice agencies provide families with several types of non-medical support to help with the caregiving process. This benefit makes it easier to stay at home to maximize the time you have with your loved one. Trained volunteers can help you to run errands, prepare a few meals, and be a listening ear when you need to talk with someone. This care option is one of the ways that hospice providers work to take care of the entire family during an expected end-of-life situation.
A major issue with an individual who is dying is the stages of death and the anxiety that comes with that process. When an individual is in hospice, the interdisciplinary team can educate the individual and their family about the stages of death and provide essential tips on care during this time.
10. Home care is not the only option available for hospice care.
Although most people elect to receive hospice and palliative care at home, some hospitals have specific wings created to provide these services in their facilities. Some providers have care centers fully outfitted to manage the unique needs of a patient at this stage of their life. Many of these facilities have high workloads that can get frustrating for caregivers, but it is essential to remember that there are options available for families to consider.
11. In the time of COVID-19, your loved one does not have to die alone.
During the COVID-19 pandemic, hospitals separated patients from visitors in an effort to stem the spread of the virus. This separation occurred whether or not the patient had the virus. This means that if your loved one were undergoing treatments and admitted to the hospital, they would die alone. With home hospice, they are able to spend their final moments surrounded by friends and family. This love and peace for both the individual and their family is priceless.
List of the Disadvantages of Hospice Care
1. Hospice care can result in some financial difficulties.
The primary reason that families typically avoid hospice care involves finances. Once a patient enrolls in this caregiving program, the Medicare benefits provide a flat, per-day amount out of which every medical expense gets paid. That means there can be severe limitations on the money that’s available to some families. If you need to hire caregivers, then that requirement might get classified as an optional service. That means you’d need to pay for it out-of-pocket, and for many, this means it is unaffordable.
This, and many of the other disadvantages listed in this article, are directly caused by government policy. A change in government policy could eliminate 6 out of the 9 disadvantages listed here.
2. Patients may receive a denial of some diagnostic tests.
Once a patient enters hospice care, the cost of any tests ordered by the attending physician becomes the financial responsibility of the agency providing services. Since these diagnostics can often be expensive without being beneficial, it is not unusual for the attending agency to deny them. That doesn’t mean a patient gets excluded from this form of care, but it can mean that the family pays more out-of-pocket for these services.
3. Patients must meet a specific standard to qualify for hospice care.
Two doctors must certify that a patient has a life-altering condition that will likely result in death within six months or less for someone to qualify for hospice care. It is essential to remember that this diagnosis is just a guess. There isn’t a scientific way to know with absolute certainty how much time a person has with their current medical condition.
4. Some agencies do not provide the quality of care that patients deserve.
Kaiser Health News analyzed over 20,000 government inspection records of hospice care providers in the United States in 2017. Their findings discovered that neglect and missed visits are common for individuals who are dying at home. Over 3,200 complaints were filed between 2012-2016 with state officials in the U.S., with inspectors finding problems in over 750 agencies. Over 50% of them got cited for missing visits and other promised services.
The Office of Inspector General of the U.S. Department of Health and Human Services found in July 2019 that 87% of the operational hospice providers violated at least one Medicare safety requirement over the past five years. The number of severe complaints against providers also tripled during that time.
5. It is a caregiving approach that discourages hospitalization.
Medicare provisions for hospice care does allow for inpatient hospitalization stays to manage symptoms. The criteria for admission are somewhat vague under the current statutes, while the coverage available for specific treatments is often defined poorly. That means long-term hospitalization is discouraged with this caregiving effort, even when it might be an essential component of the patient’s comfort.
The decisions involved with this disadvantage tend to be geographically based, with a focus on the gap between non-profit and for-profit providers. Families living in the U.S. southern states tend to experience this issue more often.
6. In-patient hospice care may not be an option for some families.
Hospice care typically involves a family caregiver providing services in the home environment. Nurses and volunteers can provide respite services, but it is usually up to a patient’s loved ones to meet daily care needs. That includes bathing, medication management, and any authorized therapies. If no one in the family is available because they are unable to physically or emotionally take on this task, then in-patient hospice is the next best alternative.
Some in-patient hospice facilities will only admit people who have an expected 2-4 weeks left to live. Home hospice can begin with a life expectancy of six months or less. That gap in services can be an immensely stressful time for many families.
7. You cannot participate in experimental treatments.
Once a patient enters hospice care, then they are not allowed to participate in clinical trials or experimental treatments unless extraordinary circumstances exist. These services are considered a life-prolonging measure, which means the costs aren’t financially covered by most programs. This disadvantage also applies to nasogastric needs, including feeding tubes, because those approaches will also prolong a person’s life.
8. Hospice care doesn’t eliminate fear and anxiety from the equation.
Taking care of a loved one at home can be a scary process. You’re asked to manage someone’s medications, medical equipment, and other needs. Some people are natural caretakers who enjoy caring for others, but then others don’t know if they would have the emotional strength and endurance to handle being a caretaker for an extended period. Trained staff can teach you how to administer medication and handle the other tasks, but there still will be anxiety about what happens with death. Nothing in this world can eliminate the fear and anxiety of dying and the fear of the unknown after death. It can be an overwhelming job for those who take it on.
9. There can be a lack of caregiver support in some communities.
If you live in a rural area, then it may be difficult to obtain meaningful hospice services. You might be asked to provide many of the caregiving needs by yourself with fewer check-ins from medical professionals. You’ll also notice that some family members don’t participate equally when caring for loved ones who reach this stage of life. It is not unusual for caregivers to find themselves resenting the other people in their family because they’re not providing the same amount of help.
Hospice care needs can vary for each patient and their loved ones. Every situation is unique. It is not unusual for doctors to hold off on a recommendation for this caregiving approach until someone is already close to death, which means they miss out on the many benefits that are possible with this form of care.
There are many misconceptions about hospice care that many people still believe all over the world. Some of this problem has to do with a general lack of awareness about the services and benefits that are available with this caregiving option. That means some people fail to enter hospice care at all, leading to high under-utilization rates in many communities.
The disadvantages of hospice care are largely due to government restrictions that lead to a decrease in services or access to services, and a decrease in insurance coverage or denial of coverage.
The advantages and disadvantages of hospice care could lead you toward one of the final significant decisions that you make with a loved one. Weigh each key point carefully to determine if it is an option you want to pursue with your current doctors and caregivers.
For more information about what hospice care options are available near you, visit the Medicare website.
Blog Post Author Credentials
Louise Gaille is the author of this post. She received her B.A. in Economics from the University of Washington. In addition to being a seasoned writer, Louise has almost a decade of experience in Banking and Finance. If you have any suggestions on how to make this post better, then go here to contact our team.