DEAR MAYO CLINIC: I have a loved one who was referred for hospice care. I’m not sure what this means. Can you share more about what hospice care is and how it may help my family member?

ANSWER: Hospice care might be an option for people who are nearing the end of life due to a terminal illness and have exhausted all other treatment options.

Unlike other medical care, the focus of hospice care is not to cure the underlying disease. The goal is to support the highest quality of life possible for whatever time remains. Enrolling in hospice care early can help your loved one live better.

Hospice care is provided by a team of health care professionals who aim to maximize comfort for a person by reducing pain and addressing physical, psychological, social and spiritual needs. To help families, hospice care also provides counseling, respite care and other support, including bereavement services.

Who is eligible for hospice care?

Hospice services are typically for a person who is expected to have six months or less to live.

Many people who receive hospice care have cancer, but hospice care is available for patients with other serious or advanced medical conditions, such as heart disease, dementia, kidney failure or chronic obstructive pulmonary disease.

What is the benefit of hospice care?

Hospice care decreases the burden on family, decreases the family's likelihood of having a complicated grief and prepares family members for their loved one's death.

Additionally, since many family members often serve as the primary caregiver for their loved one, hospice care can offer a break to caregivers by allowing a patient to be cared for at a facility for a period of time. This is known as respite care.

Who is involved in hospice care?

While many people opt to receive hospice care at home, it also can be available at hospitals, nursing homes, assisted living facilities and dedicated hospice facilities. Typically, hospice staff will make regular visits to your home or other setting. Hospice staff are on call 24 hours a day, seven days a week.

A hospice care team typically includes:

• Doctors. A primary care doctor and a hospice doctor or medical director will oversee care. Each patient can choose whether to have their existing primary care doctor or a hospice specialist as their main physician.
• Nurses. Nurses are an integral part of the care team and usually are responsible for the coordination of the hospice care team.
• Home health aides. Home health aides can provide extra support with routine care, such as dressing, bathing and eating.
• Spiritual counselors. Chaplains, priests, lay ministers or other spiritual counselors can provide spiritual care and guidance for the entire family.
• Social workers. Social workers provide counseling and support. They also can provide referrals to other support systems.
• Pharmacists. Pharmacists provide medication oversight and suggestions regarding the most effective ways to relieve symptoms.
• Volunteers. Trained volunteers offer a variety of services, including providing company or respite for caregivers, and helping with transportation or other practical needs.
• Other professionals. Speech, physical and occupational therapists can provide therapy, if needed.
• Bereavement counselors. Trained bereavement counselors offer support and guidance after the death of a loved one in hospice

Selecting a hospice program

Depending upon where you live, there may be several hospice programs available. Speak with your care team, including doctors, nurses and social workers, about their experiences with different hospice programs. Also, ask friends and your local or state office on aging.

Consider the following questions when evaluating a hospice program:

• Is the hospice program Medicare-certified? Is the program reviewed and licensed by the state or certified in some other way? Is the program accredited by The Joint Commission?
• Who makes up the hospice care team, and how are they trained or screened? Is the hospice medical director board-certified in hospice and palliative care medicine?
• Is the hospice program nonprofit or for profit?
• What services are offered to a person who is terminally ill? How are pain and other symptoms managed?
• Does the hospice program have a dedicated pharmacist to help adjust medications?
• Is residential hospice available?
• How are hospice care services provided after-hours?
• How long does it take to get accepted into the hospice care program?
• What services are offered to the family? Are respite services available for caregivers? Are bereavement services available?

Remember, hospice stresses care over cure. The goal is to provide comfort during the final months and days of life. — Dr. Maisha Robinson, Neurology, and Dr. Molly Kilpatrick, Palliative Medicine, Mayo Clinic, Jacksonville, Florida

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It was announced earlier this week that former President Jimmy Carter has entered hospice care.  But just what is hospice care and how it can provide comfort and support?

Hospice care is for people who are nearing the end of life. The services are provided by a team of health care professionals who maximize comfort for a person who is terminally ill by reducing pain and addressing physical, psychological, social and spiritual needs. To help families, hospice care also provides counseling, respite care and practical support.

Unlike other medical care, the focus of hospice care isn't to cure the underlying disease. The goal is to support the highest quality of life possible for whatever time remains.

Who can benefit from hospice care?

Hospice care is for a terminally ill person who's expected to have six months or less to live. But hospice care can be provided for as long as the person's doctor and hospice care team certify that the condition remains life-limiting.

Many people who receive hospice care have cancer, while others have other serious or advanced medical conditions such as heart disease, dementia, kidney failure or chronic obstructive pulmonary disease.

Enrolling in hospice care early can help you live better. Hospice care decreases the burden on family, decreases the family's likelihood of having a complicated grief and prepares family members for their loved one's death. Hospice also allows a patient to be cared for at a facility for a period of time, not because the patient needs it, but because the family caregiver needs a break. This is known as respite care.

Where is hospice care provided?

Most hospice care is provided at home — with a family member typically serving as the primary caregiver. However, hospice care is also available at hospitals, nursing homes, assisted living facilities and dedicated hospice facilities.

Who's involved in hospice care?

If you're not receiving hospice care at a dedicated facility, hospice staff will make regular visits to your home or other setting. Hospice staff is on call 24 hours a day, seven days a week.

A hospice care team typically includes:

• Doctors. A primary care doctor and a hospice doctor or medical director will oversee care. Each patient can choose to have their prior primary care doctor or a hospice doctor as their main physician.
• Nurses. Nurses will come to your or your relative's home or other setting to provide care. They are also responsible for coordination of the hospice care team.
• Home health aides. Home health aides can provide extra support for routine care, such as dressing, bathing and eating.
• Spiritual counselors. Chaplains, priests, lay ministers or other spiritual counselors can provide spiritual care and guidance for the entire family.
• Social workers. Social workers provide counseling and support. They can also provide referrals to other support systems.
• Pharmacists. Pharmacists provide medication oversight and suggestions regarding the most effective ways to relieve symptoms.
• Volunteers. Trained volunteers offer a variety of services, including providing company or respite for caregivers and helping with transportation or other practical needs.
• Other professionals. Speech, physical and occupational therapists can provide therapy, if needed.
• Bereavement counselors. Trained bereavement counselors offer support and guidance after the death of a loved one in hospice.

How is hospice care financed?

Medicare, Medicaid, the Department of Veterans Affairs and private insurance typically pay for hospice care. While each hospice program has its own policy regarding payment for care, services are often offered based on need rather than the ability to pay. Ask about payment options before choosing a hospice program.

How do I select a hospice program?

To find out about hospice programs, talk to doctors, nurses, social workers or counselors, or contact your local or state office on aging. Consider asking friends or neighbors for advice. The National Hospice and Palliative Care Organization also offers an online provider directory.

To evaluate a hospice program, consider asking:

• Is the hospice program Medicare-certified? Is the program reviewed and licensed by the state or certified in some other way? Is the hospice program accredited by The Joint Commission?
• Who makes up the hospice care team, and how are they trained or screened? Is the hospice medical director board certified in hospice and palliative care medicine?
• Is the hospice program not-for-profit or for profit?
• Does the hospice program have a dedicated pharmacist to help adjust medications?
• Is residential hospice available?
• What services are offered to a person who is terminally ill? How are pain and other symptoms managed?
• How are hospice care services provided after hours?
• How long does it take to get accepted into the hospice care program?
• What services are offered to the family? What respite services are available for the caregiver or caregivers? What bereavement services are available?
• Are volunteer services available?
• If circumstances change, can services be provided in different settings? Does the hospice have contracts with local nursing homes?
• Are hospice costs covered by insurance or other sources, such as Medicare?

Remember, hospice stresses care over cure. The goal is to provide comfort during the final months and days of life.

This article is written by Mayo Clinic staff. Find more health and medical information on mayoclinic.org.

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Ashley Evenson lived with a lifelong illness known as Cockayne syndrome that prematurely aged her. Ashley lived with her disease for 32 years before passing away in 2019.

Ashley received palliative and hospice care over the course of her life, and Ashley's mom, Lynn Evenson, wants people to know about the benefits of hospice care.

"To keep Ashley’s memory alive, I want to tell her story," says Evenson. "And I want to make it open to people to understand and learn what hospice is really about and how it can make a big difference — not just for the patient but for the caregiver, as well."

People are often confused about the difference between palliative care and hospice care. Palliative care is for anyone who has been diagnosed with a chronic illness. When a cure is not possible, a shift to hospice care can offer supportive measures for the patient and the family.

And an early referral to hospice can help everyone involved.

"Hospice can provide so much care and comfort in all aspects of the end of life experience for both the patient and the family, says Jennifer Larson LaRue, a Mayo Clinic psychotherapist. "So it helps that very difficult, painful time go more smoothly, I think."

November is National Hospice and Palliative Care Month, a time to recognize the important work these programs do to help patients and their families when a cure is not possible.

On the Mayo Clinic Q&A podcast, Larson LaRue joins Evenson, who shares her family's journey through illness and their wish to help educate others about the advantages of hospice care.

Watch: The important role of hospice care.

Read the full transcript.

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For the safety of its patients, staff and visitors, Mayo Clinic has strict masking policies in place. Anyone shown without a mask was recorded prior to COVID-19 or recorded in an area not designated for patient care, where social distancing and other safety protocols were followed.

Information in this post was accurate at the time of its posting. Due to the fluid nature of the COVID-19 pandemic, scientific understanding, along with guidelines and recommendations, may have changed since the original publication date. 

For more information and all your COVID-19 coverage, go to the Mayo Clinic News Network and mayoclinic.org.

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DEAR MAYO CLINIC: My 65 year-old-mother was diagnosed recently with Parkinson's disease. A friend mentioned that we should see a palliative care doctor to develop a care plan. I don't think my mother is dying anytime soon. Can you explain palliative care and why we might need a consultation?

ANSWER: I am sorry to hear about your mother's diagnosis. It can be challenging to have a loved one with a neurodegenerative disease like Parkinson's disease, but it is wonderful that she has you to assist her.

Palliative care is a specialty that focuses on improving quality of life for people who have chronic, serious or advanced medical conditions. It can benefit patients and families at any point along the disease course, even at the time of diagnosis.

While you mentioned that your mother is not dying anytime soon, there is a role for palliative care throughout the disease trajectory, from the time of diagnosis until the end of life. Palliative care is not synonymous with hospice care, which is specialized care for people who are near the end of their lives.

A palliative care consult focuses on the physical, spiritual, social and psychological aspects of care for the patient, and his or her caregiver. The palliative care team may include a combination of physicians, nurses, advanced-practice providers, chaplains, social workers, therapists and pharmacists. The team assesses and manages symptoms, supports caregivers, helps establish care goals, and discusses advance-care planning.

Suboptimal control of symptoms can negatively affect quality of life. Thus, the palliative care provider aims to maximize function and quality of life by reviewing symptoms and offering options. The types of symptoms that are assessed include pain, nausea, anxiety, depression, constipation, diarrhea, fatigue and insomnia.

The palliative care team also cares for caregivers. Caregiver stress can negatively affect patients, so the team tries to identify and alleviate caregiver stressors and burdens. This may include making recommendations for additional assistance in the home, or increasing support services, such as physical or occupational therapy, or respite care.

The team inquires about the patient's medical, personal and family goals. For instance, one person may want to plant and tend to a garden, and another patient may want to travel to see family members. The role of the palliative team is to help patients meet their goals and ensure that their medical goals align with available therapeutic options.

Advance-care planning is the process of discussing one's preferences for care when they are at the end of his or her life. It is a topic that some people are hesitant to discuss, but it is important, particularly when people have a serious or advanced medical condition. Making decisions in advance of when they are needed guides family members and the medical team.

In addition to discussion, patients are encouraged to complete an advance directive. The advance directive includes two parts: designation of a health care surrogate and a living will.

A health care surrogate is a person who would help make medical decisions if one is unable to make his or her own decisions. This person can be anyone who would feel comfortable carrying out the person's wishes, such as a family member, friend or co-worker.

The living will is a document that outlines one's wishes for life-prolonging care at the end of life. Another topic that may be covered is whether a person would want CPR when his or her heart stops or when he or she stops breathing, or if he or she would want to allow for a natural death. The latter option is often referred to as a do-not-resuscitate order, or DNR.

Palliative care is a complementary service to a person's general or specialty medical care, and it can be provided while people are receiving medical therapies, chemotherapy, dialysis, surgical procedures or other life-prolonging therapies. People often appreciate the additional support that the palliative care team provides. — Dr. Maisha Robinson, Neurology, Mayo Clinic, Jacksonville, Florida

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Related Articles 

• What to know about Parkinson’s disease published 1/22/20
• Science Saturday: Strengthening the case for palliative care published 11/23/19

The post Mayo Clinic Q and A: What is palliative care and who needs it? appeared first on Mayo Clinic News Network.

Death, ultimately, is inevitable. It happens to everyone. But for patients at Mayo Clinic Health System in Mankato's Hospice Program, the process of dying is becoming more bearable for themselves and their families as a result of several research studies aimed at understanding more.

"We know Mayo Clinic is big on curing and healing patients by inventing new treatments and procedures, but the end of life is so important, and we cannot miss that," says chaplain and principal investigator Jacek Soroka, Ph.D. "Because we will all die. We will all go through it, and we need to have the same quality of care at the end of life as we do with other aspects of care."

The research studies, which focus on caregiver confidence, spiritual care, and end-of-life care involving the deactivation of a pacemaker, were conducted by Chaplain Soroka and Greg Kutcher, M.D., medical director of the hospice program in Mankato, as well as other members of the hospice team.

While each of the studies centers on a different aspect of hospice, they have a common goal.

"Even though it's the end of life, it's incredibly important for patients to have closure and resolution, and feel good about their life's story and what they're leaving with other people," Dr. Kutcher says. "We need to better understand how to do that."

Dr. Kutcher says studies show that if a loved one's dying process is handled poorly, it can have a lasting effect on those left behind.

"If it's handled well, it can be a positive thing in terms of creating a particular place in their heart for that person as they move forward," he says. "And we should not leave that to chance."

Read the rest of the article on the Advancing the Science blog.
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Other Mayo Clinic medical research websites:

• Research at Mayo Clinic
• Discovery’s Edge
• Advancing the Science
• Forefront
• Mayo Clinic Center for Individualized Medicine
• Center for Regenerative Medicine
• Center for the Science of Health Care Delivery

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Seven decades after serving as a member of the U.S. Navy's female code breakers during World War II, Helen Chadwick was recognized for that service at a We Honor Veterans ceremony.

To this day, Helen Chadwick won't share any details of her military service, still staunchly holding true to the oath of secrecy she took some seven decades ago. She'll only confirm she was there. During the height of World War II, Helen — then in her mid-20s — was a member of the United States Navy's female code breakers. The elite and highly secretive unit was responsible for cracking the German armed forces' Enigma Code, which led to the ultimate downfall and defeat of the Nazi army.

And even though the details of her unit's top-secret intelligence work have since been declassified and chronicled in multiple books, Helen's decades-long silence and refusal of recognition has remained, as a showing of her "continued service to our country."

Read the rest of the story.

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This story originally appeared on the In the Loop blog.

The post In the Loop: Thank you for your service, Helen Chadwick appeared first on Mayo Clinic News Network.

ANSWER: People often confuse palliative care and hospice care, thinking they are the same thing. But they’re not. Palliative care focuses on improving quality of life for anyone who has a serious illness. Hospice care is a form of palliative care for people whose illness has advanced to the point that they likely have less than six months to live.

People who receive palliative care have a wide range of illnesses, such as cancer, Parkinson’s disease, heart disease, dementia, kidney failure and stroke. Palliative care can be useful to people of any age who have a serious illness, no matter the stage of the disease or long-term outlook.

The goal of palliative care is to help people living with illness feel better overall. Doctors who specialize in palliative care have expertise in relieving symptoms that often accompany serious illness, such as pain, fatigue, nausea, vomiting, constipation, sleep problems and depression.

Palliative care also takes into account a person’s emotional and spiritual well-being. In many cases, palliative care provides services to the entire family, helping everyone involved better cope with the disease.

If you opt to have palliative care, it doesn’t limit other care or take the place of therapies used to treat or cure disease. Palliative care can be provided together with curative treatment.

Teamwork is a key part of both palliative care and hospice care. Palliative care professionals can come from a wide range of medical specialties. In addition to physicians, the team includes nurses, pharmacists, social workers and chaplains.

It is important to note that palliative care professionals become part of a patient’s health care team. They replace no one. This means that the palliative care professionals will not take the place of your doctors or any other established care team members. Instead, palliative care experts work with those providers to offer a coordinated approach.

As a subset of palliative care, hospice care is intended for people who have no further options to treat a life-threatening illness effectively or for whom those treatments don’t provide them with improved quality of life. Hospice focuses on providing the highest quality of life possible, while supporting the whole family. Hospice recognizes dying as part of the normal process of living, affirms life, and neither hastens nor postpones death.

Hospice care is for terminally ill people expected to have six months or less to live. This doesn’t mean that hospice care will be provided only for six months, though. Hospice care can be continued for as long as the individual’s doctor and hospice care team confirm that the illness remains life-limiting. Hospice care can be provided at home. But it is also offered in hospitals, nursing homes, assisted living facilities and dedicated hospice centers.

With hospice, treatments are offered for many symptoms, such as constipation, pain and nausea, among others. If symptoms cannot be controlled at home, then admission to a hospital may be necessary, even if an individual is enrolled in hospice.

If you or a loved one are dealing with a serious illness, talk to your health care provider about the benefits of palliative care and the palliative care services offered through your health care organization. Palliative care can be useful when navigating a serious illness, helping patients and families feel better ─ physically and emotionally. — Dr. Jacob Strand, Palliative Care Clinic, Mayo Clinic, Rochester, Minnesota

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Parkinson's disease is a progressive disorder of the nervous system that affects movement. April is Parkinson’s Disease Awareness Month, and on the Mayo Clinic Radio podcast, neurologist Dr. J. Eric Ahlskog discusses treatment options for Parkinson's disease. Also on the program, preventive medicine and rehabilitation expert Dr. Jay Smith shares new treatment options for carpal tunnel syndrome. And palliative care specialist Dr. Jacob Strand explains how early referrals to hospice care can help patients and families benefit from many of the services they are eligible for at the end of life.

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Here's the Mayo Clinic Radio podcast.

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Listen to the program on Saturday, April 8, at 9:05 a.m. CDT, and follow #MayoClinicRadio.

Mayo Clinic Radio is on iHeartRadio.

Access archived shows.

Mayo Clinic Radio produces a weekly one-hour radio program highlighting health and medical information from Mayo Clinic.

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