Everything You Need to Know About Hospice Care

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

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.

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.

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.

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.

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

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.

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.

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 .

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

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.

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

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?

This site is very informative!

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

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

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

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.

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

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.

My mother is in a nursing home in late stage Alzheimer's. She doesn't walk, talk, communicate in any way, is completely incontinent, has to be spoon fed. I have tried and tried to get her into hospice only to be met with the proverbial BRICK WALL. The first time I tried she was not accepted because she had gained weight. No kidding? SHE WAS ON STEROIDS FOR HIVES CAUSED BY A DEGENERATIVE IMMUNE SYSTEM. The nursing home staff is rude and dismissive whenever I try to discuss it with them. I am at my wits end.

Hospice all sounds great and I hope that my mother will get some peace there.

Hi Wilma clyne, Thanks for your comment. I'm sorry to hear about your tough situation! One place you can for for advice is our Ask & Answer section: (http://www.caring.com/questions/new) OR you can ask our community in our Money Matters section of our forums: (http://www.caring.com/forums/deals-and-discounts) Best of luck, I'll keep you in my thoughts -- Emily

I need help my dad is wheelchair bound and Medicare will not pay for bed any longer or wheelchair him and mother are on limited income making it difficult to meet the rent utilities and prescription cost let alone they are raising two granddaughters they have had for ten years.dad wants to return home they have already prepared us for the worst but hope for the best.if you know anyone that can help this family out. maygodblessusall.

just started using hospice care for parent wanted to find out general information thanks for providing this service

the general info on what hospice is, how it is funded.

I work for a Hospice agency as the Social Worker... I wish each and every one of you find the answers you need and deserve. If you ever feel confused about IF Hospice care is appropriate, never hesitate to reach out to a local hospice to have a meeting and ask questions... That is what we are here for. I am VERY new to sending messages on Caring.com, but if I knew a way to reach out to every single one of you personally, I WOULD... just to make sure each of your circumstances are handled. YES< it is difficult to get Dr's on board at times with Hospice... however, please remember, YOU , as the caregiver for your loved ones, you are an ADVOCATE for them... if Hospice, comfort, quality at end of life is what your loved one deserves, then get on that phone and begin that conversation with that DR.. .... Hospice is not necessarily 6 months or less to live, as that stigma has been attached to the word Hospice for years... I myself have had patients on for 2 years now... .... I tell my patients and families it is when you or your loved one is saying,... ENOUGH with aggressive treatments, leave me alone and let me LIVE my life as I am able...... Then we (hospice) steps in and ensures comfort and allows you or your loved one to live out what ever it may be., that makes you "LIVE" the rest of that life. Take Care.

helped me understand more about the care of my sister.

All of the Hospice information. I live in a very small town,not much money no insurance and I am grateful to see the different ways that care can be found.

Can I count on my Visiting Physican group to let me know when they think Hospice is called for? How do we know. I already have aides 24/7 but my Mom is housse bound at 95 and suffers from extreme arthritic pain.

My mother has stage four cancer, She is in Hospice Care at home now. But im 500 miles away from her.

can someone send me information on how to get licensed as a hospice care provider? Thanks.

Yes, My Mother has less than six months to live. The Doctor told us me need this care.

I have a question, say my sister is dying and we ask for hospice to come in now is this true she is to be fed when she is no longer able to eat on her own, say do to too much medication and she is sleeping all the time, now shouldn't she be fed by an IV? and not starve her to death along with her other problem?

Hospice care was the choice of my mother. After a brief virus with no permanent future in sight she chose hospice. First at home and then eventually at the facility. As hard as it was to accept her decision we realized it was her choice that was the only one that counted. Still I have questions and reservations, however I realize that this is part of accepting her gone. The hospice care was excellent, respectful and kind. I especially remember a social worker by the name of Mary who came to our home to visit and talk-what a gem-the people who work for the hospice are very rare and devoted. Thank you for giving my mother her wish and being there for her. She is always with me and sorely missed.

It was very informative as to exactly all that hospice can do.

We are in the process of finding out that my mom is very sick in her mind. She is in the hospital now and I have been caring for her since 1/5/2010. I have been doing this on my own until her sister Ann starting helping me by taking care of her by taking her home for a week at a time. I want my mom to come home when she is able and I know that I need help with my mom, I did not realize how hard it had been on me. Her family want me to put her in a nursing home but I would like her to be here in our home until she dies. It seems that might be possible after reading this article.

thank you for the information, I see that Hospice cannot help me as I need my husbands toe nails cut, and a sore that will not heal on his hand because he will not quit picking at it, but of course denies that he does, and then it hurts alot and he gets upset, I took him in once and all they did was put him on antibiotics, and so now I have done that myself as I had some. On friday I will take him to new primary care doctor as his moved to Las Vegas, so hopefull y they can help me, he also has a plugged up ear that I have been putting stuff in for days with no results and then he forgets and asks me if I am going to do something about it. So I guess on Friday I will get help for him as he is only in the moderate stages of Alzheimers and not near death yet. I thank you for all of the infomation and I appreciate any comments you have. He is 83 and I am 72 and we live in Topock AZ. Jo Ellison

My husband received hospice care twice. The first time was about a year and a half before his death. With Parkinson's disease, it is harder to qualify because, unlike with some other diseases, it is difficult for a physician to say that the patient is within six months of death. However, my husband qualified but, after six months of the wonderful care of his hospice team, he was stable enough that they had to release him 11 months before his death. He went into the hospital eight days before his death and, after the third day, we knew he was not going home. We had already talked at length about what he wanted when the time came, so when I told the nurses that we didn't want any more treatment, tests, x-rays, etc., they asked if I wanted a palliative consult. I had to ask what that was. We got the consult and he was moved to the palliative care (comfort care) unit and three days later hospice was added to the team. It was such a blessing to have a team of caring professionals to care for my dear husband in those last days. They controlled his pain and that was a huge undertaking, as he was experiencing both physical and mental pain. He had Alzheimer's dementia as well as Parkinson's dementia, and that is a terrible combination. If you are not familiar with the function of a palliative care unit (and I was not before our experience), the first difference I noticed was the calmness and quietness, as compared to a regular hospital room. It was serene. The staff is trained to make the patient as comfortable as humanly possible and, I believe, even more comfortable than humanly possible. For, indeed, nearly every individual I came in contact with appeared to be a person of faith. They showed such compassion to my husband, me and my family. They cared for each of us with the same compassion and caring.

This is information I have been looking for--thanks so much! I always get such good info from Caring.com; support and an ear to listen, too. I love this site!!

This post was so good that, when a friend e-mailed me this morning to ask about hospice, I just sent her a copy to read. It covers everything so thoroughly.

History of the Hospice Movement The word 'hospice' was first used from the 4th century when Christian orders welcomed travellers, the sick and those in many kinds of need. It was first applied to the care of dying patients by Mme Jeanne Garnier who founded the Dames de Calaire in Lyon, France, in 1842. The name was next introduced by the Irish Sisters of Charity when they opened Our Lady's Hospice in Dublin in 1879 and St Joseph's Hospice in Hackney, London(1905). Dame Cicely Saunders' experiences while working at St Joseph's and at St Luke's Hospital (Home for the Dying Poor founded in 1893) led to the founding by her of St Christopher's Hospice in 1967. Two national charitable organisations, Marie Curie Cancer Care and The Sue Ryder Foundation have also played an important role in providing specialised care for dying people and their families. The 11 Marie Curie Homes were developed in the 1950s and the Sue Ryder Homes began to emerge in the 1970s. The growth pattern of hospices in recent years has been considerable. In the first few years after the opening of St Christopher's development was mainly in the independent, charitable sector. In the early 1970s the National Society for Cancer Relief (now known as Macmillan Cancer Relief) began a programme whereby capital grants were given to units built within NHS hospital grounds with health authorities taking over responsibility for their running costs. Hospices and palliative care have developed in different ways, appropriate to the needs of patient and family - inpatient care, home care, day care and hospital services. The different categories of patient care provided by hospices and palliative care centres are as follows: Independent or Voluntary Hospices - these units are registered charities financed mainly by charitable income. They have firm links in policy and practice with the National Health Service but receive only partial funding from health authorities. In addition to inpatient care most hospices provide home care, day services and bereevment support. Some buildings are purpose built, while others may have been established in a converted building. Units range in size from 2 to 63. Marie Curie Centres are administered by a national charity, Marie Curie Cancer Care. In addition to 11 homes there are 6000 part-time Marie Curie Nurses who nurse patients in their own homes. Sue Ryder Homes administered by the national charity, the Sue Ryder Foundation, provide palliative care for patients with cancer in all of their homes, and several have visiting nurses who attend patients in their own homes, both before admission and after returning home. Macmillan Cancer Care Units. Macmillan Cancer Relief has funded and built many inpatient and day patient units, mostly on hospital sites and now being funded and operated by the National Health Service. Macmillan has also funded, or part funded, several units operated by the voluntary sector. Palliative Care Wards/Units in NHS Hospitals. Some hospitals have designated units or wards where patients benefit from the principles and practice of hospice care.

Most hospice care is 100% paid for by medicare or insurance or indigent care. No charges are ever made to patients or familys. Hospice is very easy to obtain, a verbal from any doctor is all that is required. Most patients do not require major equipment and can be cared for at home. Hospice providers are very easily found by your local doctor or nursing home staff or phone book. They are always happy to help or can find someone who can. Thank you- Hospice RN

This is good hospice information. My partner's mother (90) is in hospice care at an assisted living facility. She has good days and bad days: sometimes the end is in sight, then she revives. But I get good info from caring.com, and it is useful in writing my weekly senior column for a local newspaper. Thanks, Judy

These pages are some of the most valuable information I have found. It is clear and concise. Thank you!