30 Sep Hospice Q & A: Some of the Most Common Questions about Hospice Care
There’s a lot that goes into electing to receive hospice care services–and in assisting a loved one in making the decision to receive hospice care. And most people who are thinking about hospice care haven’t had much experience in the hospice arena. Because of this, and because the scope of hospice care is very broad, patients and their loved ones often have many questions about hospice care, how it is paid for, how it works and what it entails.
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Here are some of the most common questions we are asked about hospice care, along with the answers to those questions. If you have a question about hospice care that isn’t addressed here, please call us and we will be happy to answer any questions you may have and to help you learn more about hospice care.
What exactly is hospice care?
Hospice care is both a philosophy of care and a type of care provided to patients with terminal illnesses. It is aimed at providing comfort care, rather than curative treatment of a terminal disease. Because hospice care is total patient-centered, it encompasses not only medical care, but also care that addresses the emotional, spiritual and psycho-social needs of the patient. Hospice care is provided to patients living with a terminal illness which is expected to result in the patient’s death in six months or less if the disease process takes its natural course.
What is the goal of hospice care?
The goal of hospice care is to improve the quality of life in patients with life-limiting illnesses by focusing on pain control and symptom management. Good hospice care achieves the goal of making patients comfortable. Hospice services include medical care, as well as care designed to address a patient’s psycho-social, emotional and spiritual needs.
Is there really a difference for patients who receive hospice services vs. those who do not elect hospice care?
There are many advantages of electing hospice care as opposed to declining it. Because hospice care embraces the philosophy that all life is of value and that each day of life should be lived with dignity and respect—and without pain and discomfort—patients who elect hospice services have the advantage of a caring team of professionals that works tirelessly to help ensure that the final stage of their lives is met with compassion, dignity and care that promotes comfort. Patients who do not elect to receive hospice services may still have their loved ones to act as caregivers, which is an invaluable blessing, but without hospice care, those patients don’t have a team consisting of doctors, nurses, hospice aides, social workers, chaplains, counselors and bereavement specialists working with them to help make the final stage of their lives transpire as smoothly and as comfortably as possible.
Does electing hospice mean I’m giving up?
Some people think that choosing hospice care means that all hope is lost and that the patient has given up on life. The truth is that patients who choose to receive hospice services haven’t given up hope; they have simply redefined their hopes. Initially, the patient may have had the hope of being cured, and now his goal is to be comfortable—pain-free and pursuing his life with dignity, and on his own terms as much as possible.
Patients who elect hospice care often do so after repeated hospital stays, trips to the emergency room and frequent doctor’s visits have exhausted them physically, mentally, emotionally and spiritually. When this happens, some patients decide to devote less of their time and attention to medical care pursuits that don’t seem to offer improvement in their quality of life and physical health. Instead, those patients decide to pursue other things that matter to them with whatever time they have remaining, whether that is learning a new skill or a new language, visiting relatives, spending time with their families or traveling.
Electing hospice care doesn’t mean a patient is sacrificing hope. Rather, it often means that he or she is re-prioritizing things that are most important.
Will I die sooner if I choose to receive hospice care?
Hospice services do not hasten a patient’s death; nor do they prolong a patient’s life. Hospice care is not focused on lengthening or shortening the amount of time a patient has to live. Rather, the focus of hospice care is on managing the patient’s symptoms, such as pain. Symptom management can improve a patient’s quality of life, which can have a very positive effect on the patient’s ability to live out his remaining days—whether few or many—with dignity and without pain. In short, the philosophy of hospice care focuses on improving a patient’s quality of life, rather than focusing on the amount of time he has left to live.
What is advance care planning?
Advance care planning involves making decisions about future health care choices in the event a patient becomes incapacitated or otherwise unable to participate directly in making choices about his health care. A living will is a document used in advance care planning that outlines a patient’s wishes about medical treatments and care, as well as life-sustaining measures and practices. A durable power of attorney for health care is a document in which a patient names a health care proxy—someone who will step in and make decisions about medical care and treatments on the patient’s behalf, should the patient become incapacitated or unable to communicate his wishes about medical care.
How do we know when it’s time for hospice care?
There are many signs exhibited by a person with a terminal illness that can signal the need for hospice care. The best time to call hospice is as soon as you or a loved one are diagnosed with a terminal illness for which there is no treatment or cure. Early intervention on the part of the hospice care team means that the terminally-ill patient can receive the best benefit from hospice care possible.
Some signs that may let you know it’s time to begin hospice care include unintentional weight loss, lack of appetite, changes in kidney function, repeated visits to the emergency room, multiple hospital admissions, repeat infections, chronic dehydration and an increase in sleep. Even if you or a loved one are not yet experiencing these signs and symptoms, the decision to begin hospice care can be based on the patient’s decision to pursue comfort care instead of aggressive treatment. Hospice care should begin when current treatments are no longer effective.
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Where must I live to receive hospice services?
Patients who are eligible to receive hospice care may do so in a variety of environments and settings. Hospice care can be provided to a patient in his own home or in the home of a loved one, in a skilled nursing facility or nursing home, in an assisted living facility or even in the hospital when necessary.
Who can make a referral to a hospice agency?
Anyone can call a hospice agency to request hospice care either for himself or for someone else. A patient can call on his own behalf, or someone else—a family member, friend, clergy member, doctor, nurse, social worker, etc.—can call for the patient. After the initial inquiry or referral is made, a hospice nurse will visit the patient and conduct an evaluation to determine whether he meets hospice eligibility requirements. If you or someone you care about is in need of hospice care, you can reach a member of the compassionate team at CarePlus Hospice by calling 972.243.3033.
I have cancer. Can I still receive chemotherapy treatments if I elect to receive hospice care?
When a patient is diagnosed with cancer, chemotherapy is often the first type of treatment used in attempting to cure the disease. Chemotherapy drugs are used to kill cancer cells and stop them from spreading.
When a patient elects to receive hospice care, aggressive or curative treatments are no longer the focus. The focus instead becomes on improving quality of life, controlling pain and managing the symptoms of a disease or illness. Because chemotherapy is most often used as a curative treatment, people think that they will no longer have the option of chemotherapy treatment once they elect hospice care.
But if the patient’s doctors determine that chemotherapy will serve as an effective method of controlling the patient’s pain and managing symptoms of his disease process, it can be an available form of treatment. However, curative chemotherapy—chemotherapy aimed at curing cancer—is not used for patients who’ve elected hospice care.
Is there a limit to how long I can receive hospice care?
In order to be eligible to receive hospice services, you must have a terminal illness. Your doctor must estimate that your life expectancy is six months or less if your illness takes its normal course. This doesn’t mean you will not live longer than six months—doctors cannot predict the future; they can only offer their best medical prognosis or projection.
Some patients receive hospice services for longer than six months if they continue to appear to be in the final stages of the disease process. If a patient’s health improves and his doctor no longer feels that his life expectancy is six months or less, he can be discharged from hospice services and resume regular medical care.
There is no set limit to the amount of time a patient can receive hospice care, but in order to continue to receive services, the patient must also continue to meet certain eligibility criteria and be recertified by his care providers.
Can I keep my current doctor if I choose to receive hospice services?
Yes. Your doctor will be a part of your hospice care team as well. You do not have to end your relationship with your personal doctor just because you elect to receive hospice care.
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How much does hospice care cost?
Hospice services are covered by Medicare, Medicaid (in most states), the Veterans Affairs Health Administration and some private insurance carriers. About 99% of patients who receive hospice services incur no out-of-pocket expenses for hospice care.
Under private health insurance, there are variations in coverage and in qualifications, but most plans offer some coverage for hospice care. Patients without Medicare, Medicaid or private insurance can sometimes receive free hospice care or hospice care billed on a sliding scale.
What is provided as part of hospice care?
Hospice services include nursing care, spiritual guidance from a chaplain, physical and occupational therapy when needed, nutrition services and more. The provision of necessary medical equipment is also part of the hospice care benefit. Essential hospice medical equipment and supplies include a hospital bed, medications related to the patient’s hospice diagnosis and other related conditions, oxygen concentrators and portable tanks in case of power outages and incontinence supplies.
Other supplies are provided as needed to provide treatments related to the patient’s hospice diagnosis, such as alternating air pressure mattresses, bedside commodes, walkers and wheelchairs, nebulizers, ostomy supplies, wound dressings, catheters and more. Hospice patients are not required to provide their own medical equipment, as those things are covered under the Medicare Hospice Benefit.
Who makes up the hospice care team?
The hospice care team is comprised of compassionate professionals who are experts in providing end-of-life care to patients with life-limiting illnesses. The team includes physicians, nurses, hospice aides, social workers, chaplains, counselors and grief specialists, a bereavement care coordinator and hospice volunteers. The patient and his loved ones/caregivers are also a vital part of the hospice care team.
What happens if my health improves after I begin receiving hospice services?
If a patient’s health improves after he has elected hospice care, he can be discharged from hospice services and resume normal medical care. He is able to re-elect hospice care in the future if he has the need for services at a later time.
If I begin receiving hospice services at home but need to move to a different care setting, will I lose my hospice benefit?
Not at all. Hospice services are brought to the patient—wherever he or she is. For example, if a patient is living in his own home and receives hospice care and it is then determined that his needs would be better met at a skilled nursing facility, hospice care would simply continue in the new setting. There is no need for a new referral or evaluation.
Who regulates, inspects and reviews care provided by a hospice agency?
There are regulations and laws that protect the rights and interests of patients receiving hospice care. Those laws outline standards of hospice care and govern the services that are provided by hospice agencies. Agencies must be licensed and certified by state regulators in order to provide hospice services and be reimbursed by Medicare. Government agencies at both the state and federal levels serve to regulate the practices of every hospice agency that provides hospice care.
How can I help my loved one who’s receiving hospice care?
There are many ways in which you can show your support to your loved one. The most important thing you can do is to simply be there for him. During this journey, patients with life-limiting illnesses can benefit greatly from knowing that the ones they love care about them and still want to be a part of their lives. Another way to help your loved one is by being a good listener. You don’t have to have the perfect answers or responses. You can comfort your loved one by simply listening to him as he talks about whatever is on his mind. He may want to talk about his feelings about his illness, or he might want to talk about things that have nothing to do with his disease at all. Listening to him and letting him talk is an invaluable gift and conveys your love and care for him.
Educating yourself about your loved one’s illness can help you to better understand and anticipate his needs. It’s also important to be compassionate and find ways to offer practical help with tasks your loved one needs accomplished—even if they are simple everyday tasks.
What is bereavement care?
Bereavement is the period of mourning and grief experienced by a patient’s family members and friends in response to the death of a loved one. Bereavement is also the process of grieving the loss of that person. It is a time of adjustment as the surviving loved ones begin to accept the patient’s death, as well as a “new normal” that no longer includes the person who has died.
Bereavement care—simply put—is care and support extended to the surviving loved ones after a patient’s death. Members of the hospice care team—often social workers, counselors, chaplains and volunteers—work with the family to help them process their loss and to begin to move through the grieving process. Bereavement care can include counseling, person-to-person visits, contact via telephone calls and letters, support groups and other interventions aimed at offering support to the patient’s grieving family members and friends. Bereavement care as part of the hospice care model is available for up to 13 months after the death of the patient with a life-limiting illness.
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