What Is Hospice Care?

hospice

Hospice care is for people who can no longer benefit from regular medical treatment and are likely in their final months of life. The goal of hospice is to keep pain and suffering to a minimum, not to cure the underlying illness. For both you and the person in your care, this requires a shift in mindset from searching for a treatment that will restore health to accepting that comfort, dignity, pain relief, and privacy are prime concerns toward the end of life.

How hospice care works

Like most people, you may think of hospice as care received at home -- which is often the case. But someone can also receive this end-of-life care in a hospital, nursing home, or private hospice facility. Which is best depends on a patient's physical condition, whether the home is suited to providing hospice care, and the resources available in your community.

Hospice care isn't necessarily continuous, and a patient may switch into and out of it as a medical condition improves or deteriorates. For example, if a patient is in hospice care and goes into remission -- a period of relief from the symptoms of an illness -- the hospice care can be stopped, only to be resumed again if the symptoms reoccur or the condition gets worse.

The entree to hospice care usually comes from a diagnosis and realization: To qualify for most hospice care, a doctor must diagnose a patient with a terminal illness -- that is, a medical condition that may cause death within six months or less.

Getting hospice help

You may find that you need to use some steely persistence to get the mechanics of hospice care initiated, both in dealing with attending physicians and in finding a hospice organization willing and available to provide the needed care.

For one thing, hospice workers can't step in until they have a written referral from a physician. In addition, you'll have to locate hospice providers and make sure they're willing and able to help. In spite of the role hospice plays, it can sometimes take some lobbying to gain admittance to a hospice facility. For instance, if the facility thinks a patient might be too much of a handful (has a tendency to run off, for example), you may need to convince the staff that you'll visit and help regularly, if not daily.

The initial hospice meeting

During an initial orientation meeting, hospice workers meet with you, the patient, and interested family members to assess the plan of care. If you'll be providing care at home, the orientation workers will evaluate whether the place needs to be equipped with any special gear, such as an elevating hospital bed, a pad to help prevent bedsores, protective coverings for the floor, or ramps for a wheelchair. They may also investigate details ranging from the neighbors to the nearby barking dogs to the number of steps in the patient's house.

What to Expect From Hospice Care

If a patient requires elaborate medical care and monitoring, hospice care may be given in a building dedicated to hospice, or in a hospital or skilled nursing facility -- generally in specific rooms or wards decorated with touches such as curtains and couches to lend a more homelike feeling.

In hospice facilities, the usual rules on visiting hours and mealtime schedules are relaxed. Visitors are generally free to come and go as they wish, and meals are often family favorites. Again, the aim is to make the patient feel as comfortable and cared for as possible.

The fact that hospice care usually comes in a peaceful setting and is often given by people the patient knows and loves rather than administered in cold, clinical surroundings is one significant aspect that sets it apart from other types of traditional medical care. But there are many other differences:

  • Personalized care. Hospice care is more personal and personalized than regular medical care. The most crucial thing is to ensure that the care fits the patient's wishes and offers the most comfort possible -- a challenge and an opportunity generally not available in conventional medical settings.

It's not uncommon to hear that hospice workers make superhuman efforts to pay attention to detail and help maintain a dying person's dignity. They may try to make sure the patient gets the food he or she likes best or to make sure his or her clothes are clean and fresh.

  • Hospice care from a team. Typically, hospice care is a team effort, combining the talents and training of doctors, nurses, social workers, counselors, home health aides, clergy, therapists, and trained volunteers. Their joint efforts are focused on relieving symptoms and alleviating side effects of pain control medications -- and on giving social, emotional, and spiritual support.

Workers at hospice organizations coordinate and supervise the care that comes from various outside sources. But if you or any family members are able, you'll be responsible for administering much of the hands-on care, such as administering medicines and changing dressings. If a caregiver or family members aren't equipped to do this, hospice workers may help secure other caregivers to take over or contribute to the work.

A hospice case manager will usually be assigned to make sure that all care needs are met -- and to coordinate the comings and goings of all involved, which is especially important if the care is at home.

Other services offered by hospice care

  • Companionship. As they near death, many people seem to retrench, displaying less interest and energy in engaging with the world and people around them. But they may find it soothing to have someone read to them, play their favorite music, or simply sit quietly nearby as a calming presence.

Others seem energized at the end, with a strong urge to reminisce and discuss the past -- and they might find it most soothing to have a compassionate person around to listen and interact with them. Interestingly, many find it easier to open up to strangers rather than family members who carry the history and baggage of the years. Many hospice services can arrange for such social visitors, often drawn from a pool of community volunteers.

  • Spiritual care. Hospice care emphasizes the spiritual needs of a patient and the rest of his or her family members. The spiritual care provided is tailored to the needs and beliefs of the individuals involved -- and can encompass issues as basic as talking about the meaning of death to performing particular religious rituals. For example, a hospice worker may be able to arrange to have a volunteer visit daily and read Bible passages to a patient who would find this soothing.
  • Transferring from home care to inpatient care. If a patient's medical condition changes and he or she must be admitted to a hospital, extended-care facility, or a hospice inpatient facility, the hospice provider can coordinate the transfer. Hospice workers can also stay informed about the treatment and keep in touch with you and family members, arranging to resume in-home care when appropriate.
  • Respite care. As a caregiver, it's practically inevitable that you'll need time off from your responsibilities to relieve stress, regroup, and prevent burnout -- and respite care makes that possible. Hospice workers can provide temporary, intermittent, substitute care, relieving you of daily caregiving responsibilities.

During the break, you can rest and attend to your own personal and health needs. Most hospice services arrange for one to five days of respite care.

  • Family conferences. Hospice services generally schedule regular family conferences, often facilitated by a nurse or social worker, so that family members can stay informed about their loved one's condition and can learn what to expect during the days of physical decline ahead. Such conferences also provide everyone with the opportunity to discuss their feelings, talk about expectations, and learn about death and dying.
  • After-death services. After a death, hospice workers can perform necessary cleanup, dispose of unused medications, and call for the body to be picked up by a funeral or cremation service if that has been arranged in advance.
  • Bereavement care. Following a death, the hospice care team can help everyone through the grieving process. A trained volunteer, clergy member, or professional counselor can provide emotional support through visits, phone calls, e-mail messages, and letters. Many hospice agencies also offer support groups or will make referrals to other medical or psychological resources if needed. Bereavement services are generally available for about a year after a death occurs.

How to Pay for Hospice Care

How much hospice care will cost depends on the length and types of services required. But because a patient may receive the care at home rather than in a hospital, and because palliative end-of-life care generally doesn't require a great deal of technical equipment, it's generally less expensive than traditional medical care.

Another thing that helps hold down the cost of hospice care is that most providers have a policy of basing their charges on need rather than an ability to pay.

Still, hospice bills can easily run several thousands of dollars or more if care is required for more than a few months.

Some of the costs must be paid with personal family assets and insurance, at least initially. The vast majority of hospice care bills, however, are currently paid by Medicare , the federal health insurance program that covers some younger people with disabilities and those adults who:

  • are age 65 and older
  • who haven't turned 65 yet but who've received Social Security disability payments for two years, or
  • are diagnosed with end-stage renal disease.

In some locales, church and religious groups offer volunteer services and money for those who can't afford to pay for hospice care on their own. In addition, those with limited income and financial resources may qualify for such care through the Medicaid program. And still others receive financial assistance through programs offered by specialized groups, such as the Veterans Health Administration, Civilian Health and Medical Program of the Uniformed Services, or Indian Health Services.


over 1 year ago, said...

If I sm no longer in need of hospice care may I keep heavy medical equipment issued to me?


over 1 year ago, said...

There is so much that goes into hospice care, I had no idea. My mother just found out that she is quite sick, and probably doesn't have long. I want to talk about options now, while she is still feeling well enough to talk about it. It's not a conversation you want to have, but it's so important. Thank you for all the great information, this is going to make things easier on us.


about 2 years ago, said...

a few months ago, our mom was transferred to Hospice because an ER Dr. Bowen @ St.Lukes Baptist and a Hospice employee-Susan M.( don't know her title,if she was a social worker, or what?) but she seemed to brainwash us that our dear Mom was going to die the next 2 days because she had "seen patients like this before". well, she was very wrong, it sure didn't happen. Inspite of us requesting feeds for our Mom, because she had a Gtube, the doctors @Hospice on Blanco Rd. stopped her feeds because they said she wasn't "absorbing her feeding." I asked, "how do you know?", the female doctor responds, "she has enough fluids (edema on arms and legs) that she needs to absorb." Then,they doubled her Morphine and I don't know what else they gave her, to the point of "not responding". ( she never drank or took any pain meds). Her brain was totally intact when she arrived to Hospice. THEY took it upon themselves to medicate her to an unconscious state and then I saw that her pupils were dilated, and I knew they had given her TOO much. Dignity is just a word, because you don't give medications rectally when you have a feeding tube and it's patent.. This was painful and horrible. we never received a call or any supportive care after our Mom 's death. the RN , Kathy, assigned as case Manager, knew we wanted to FEED our Mom and help her heal and get comfortable. we had a meeting with her about this.We never said we wanted her "to be medicated to slow her breatihng, to get pneumonia, to the point to not be able take deep breaths and then eventually she stopped breathing. As a society, we don't even do this to an inmate on death row or to our dogs and cats at the city pound. They kept telling us, her cancer is spread all over. They really didn't know. she did not have ANY tumors everywhere,like they had told us. I have made attempts to meet with the case manager-Kathy and she has not made an attempt to meet with us. Instead she has a Grief Counselor call me, then he hasn't called me back either to set up an appointment. Is this compassion? Also, one of my relatives witnessed that a patient was dropped during a bath. I hope they reported this? My Mom in Hospice was not what I thought, it was the worse 13 days of my life . Our Mom was an intelligent, honest, loving person and she knew they messed her up ( she said,they poked our eyes out - boy were we blind-sided) to a point of no return.A sad way to die.


almost 3 years ago, said...

My Mother is in a nursing with the final stages of Parkinsons. The doctor told my brother he felt it was time to call in Hospice, which we did. Then my mother got really sick and ended up in the hospital due to breathing problems. once this happened they stopped coming. She ended up in ICU again with a heart attack and choking problems. Now my mom wants to go back to the home. Can we call Hospice back in or will we be charged for it? My brother got a bill from the home with no explanation what it was for and still does not know.


almost 3 years ago, said...

Beware of Hospice care in nursing home settings. Following a massive stroke, my mom is currently on hospice in the nursing home for the second time in three years. The hospice doctors and staff have little to no authority and provide few services to my mom and family, other than a constant flow of smarmy platitudes. The nursing home has been very reluctant to administer comfort meds so we tried to switch to the hospice doc. We were told that only the nursing home doctor was licensed to see patients in house, and she is clearly affected by the home's policies. As a result, my mom, who has suffered a massive stroke, has now gone a month without eating anything, though she can still take a little water or sherbert by mouth. She cannot chew, speak or move beyond the bed. I believe she is suffering and I am currently attempting to have her transferred to a residential hospice facility. It seems that Hospice in the nursing home allows them to stop "life sustaining" medication and shields the nursing home from liability, but does little to provide comfort care for the patient, who is still bathed, fed, medicated and mostly attended to by nursing home staff, according to their policies. I was informed by the nursing home doctor and RN that my mom's advance directive, DNR and do not hospitalize orders would not necessarily be followed unless and until she was signed up for Hospice care.


almost 3 years ago, said...

Our dear mother doesn't like the blood pressure cuff. We know blood pressure readings can be taken with a finger monitor, but Hospice Alliance in Kenosha stopped visits to our mother because they don't care about the dignity or comfort of our mother. If they insist on taking a blood pressure reading, THEY should invest in a finger monitor, i.e. Omron HEM-815F


over 3 years ago, said...

To the Anonymous person which earlier suggested that their loved was given a "mercy killing," I hope you were wrong. Hospice is not about, nor is it a practice of mercy killing. Anyone dosing someone to kill them is unethical, and illegal. You should read some official hospice organisations information of call them such as the National Hospice and Palliative Organization or National Association for Homecare and Hospice to learn the true meaning of Hospice. I am personally a hospice care nurse in the area of palliative or Crisis Care.


over 3 years ago, said...

It is so nice to know there are people to help. I sometimes feels as though I am in this all alone - caring for my husband with cancer. We are in the first stages of needing to contact hospice.


over 4 years ago, said...

Having the hospice organization come into my life was a blessing.My father had copd and hospice came to his home ,I watched as they cared for him and would encourage me to help with his care.A DNR order hung on the wall was scary for me.The nurses were there to help the family through this also.Then last yr it was my mom and i was the one holding her hand as she passed.I greived for months and pulled myself together to now be in nursing classes intending to be a hospice nurse.Iwill graduate in august and know this is my path.Love hospice and what it stands for .


over 4 years ago, said...

your service provided great care for my best friend Ross Taylor he has past on in Nov of 2011 thank u for Hospic Care.


almost 5 years ago, said...

WE DIDN'T KNOW WHAT HOSPICE WAS.. SO MY SISTER DECIDED TO HAVE THEM. I WAS THEIR WHEN THEY GAVE MY DAD HIS FIRST DOSE OF MEDICATION, FROM THAT MOMENT ON WE HAD TIME TO GET MY DAD TO THE BED. HE NEVER SAID ANOTHER WORD OR DID HE OPEN IS EYES. HE NEVER DRANK ANYTHING OR DID HE EAT ANYTHING AFTER THAT. I MUST SAY, TO ME I FELT IT WAS A MERCY KILLING.


almost 5 years ago, said...

Hello gadjett, Thank you for your question. Here is an article that you may find helpful in learning the difference between hospice and palliative care: ( http://www.caring.com/articles/whats-the-difference-between-hospice-and-palliative-care ). I hope that helps -- Emily | Community Manager


almost 5 years ago, said...

My mom is in early stages of severe Alzheimer's. Her Dr recommended Hospice, but she was better the day the nurse came to qualify her, so she didn't get in. Some days are good, others...... Also, what is the difference in Hospice and Palliative Care?


about 5 years ago, said...

This site is very informative!


about 5 years ago, said...

Hello Judy1964, Thank you for your question. I'm very sorry to hear about your situation. That must be tough for you and your family. Luckily, 24 hour in home hospice care is available. To find a hospice provider in your area, please visit our local hospice directory: ( http://www.caring.com/local/hospices ). Take care -- Emily | Community Manager


about 5 years ago, said...

Brother has a very short white to live does hospice come intothe home 24/7? Terminal pancreas cancer


about 5 years ago, said...

all of this article was most helpful , by explaining exacxy what hospice does and how it all works.


about 5 years ago, said...

I just wish I had known about this before my parents passed away. It's been several years ago but I'm glad I am now aware of Hospice and how it works. Thank you for providing this information.


about 5 years ago, said...

I BECAME AWARE OF WHAT HOSPICE OFFERS, AND YOU HAVE GIVEN GOOD INFORMATION, AS USUAL!


about 5 years ago, said...

My 90 yr old Mother has been in a skilled nursing facility for the last 7 mos (dementia with psychosis) and was recently evaluated to be eligible for hospice in the same facility. We're just into the 2nd week of the transition and I'm still trying to get my bearings on how the program works and meeting with the case mgr, nurses and aide. This article helped me with dispelling my outdated notions of what hospice/palliative care is and how it helps the patient and family.