Hospice care comes in when a patient has a terminal diagnosis and is expected to live less than six months. The hospice team will help manage end of life care and comfort. This is undoubtedly a difficult period for everyone involved. Questions and concerns abound.
There are many unknowns with hospice, and end of life care in general.
If you or your loved one is receiving hospice care, you might be wondering what hospice does not tell you. Do the nurses know something they’re not saying? Are there questions they can’t answer?
During my time working in long-term care in nursing facilities and assisted living facilities, I have seen hospice come in to the facility to provide care many times. I also attended numerous hospice trainings during that time. Despite everyone’s wishes when receiving hospice care, there is often a need to accept the unknowns.
Before we get into what hospice medical providers can tell you and what they cannot, it’s important to first understand exactly what hospice is.
What Hospice Is
Hospice is specialized, end of life care from an interdisciplinary team that focuses on managing symptoms and maintaining quality of life right until the individual’s death. That team is comprised of nurses, social workers, volunteers, etc. Care is most often delivered where the person resides, whether that is at home or in a long-term care residence. Comfort is the goal, so the team comes to the person where they live, allowing the individual to stay in a familiar setting. The care is available 24 hours a day and 7 days a week.
The care team uses a collaborative process to focus on the patient’s physical, psychological, and spiritual needs. Hospice care is “person centered,” meaning they develop a care plan that is unique to the individual (and their family) receiving care. So, for example, if the individual receiving care is a devout Catholic, their pastor may be invited in as part of the coordinated care.
Hospice is developed from the philosophy of palliative care. These services improve the quality of life by treating the complete spectrum of symptoms and offering psychological, emotional, and spiritual support throughout the course of the illness rather than treating the condition.
Hospice focuses only on the patient’s comfort rather than offering endless procedures and therapies. The palliative care aspect of therapy may provide a variety of painkillers without directly addressing the underlying cause of the terminal illness.
For instance, if a patient had cancer, they would only be given strong painkillers, not radiation or chemotherapy. In general, patients can avoid making frequent trips to hospital emergency departments.
Hospice care is also provided to the family, natural caregivers, and friends involved in the process. They are connected with support groups and offered bereavement care. Bereavement care is seen as a crucial component of hospice, so it is offered for up to 13 months after the individual has passed. In many ways, hospice care is not just support for the dying person, but for everyone involved.
How Hospice Services Help
Seasoned hospice clinicians bring a unique skill set and in-depth understanding of the dying process to the table. Team members use a holistic, non-medical approach to patient and family communication.
They are concerned with quality-of-life issues that medical professionals may ignore or are ill-equipped to handle. They aid in resolving outstanding medical or personal issues and are knowledgeable of what to expect when the end of life draws near. They are adept at addressing the concomitant concerns and uncertainties that death instills in all of us as well as knowing how to begin the painful dialogues delicately.
In the best-case scenario, hospice medical staff work with families to help patients die peacefully. They demonstrate that it is possible to exit this world without experiencing any pain or suffering and how much solace consciousness may provide to the sufferer and their loved ones. These encouraging outcomes motivate hospice professionals worldwide to complete their vital service.
Who Qualifies for Hospice
A person can qualify for hospice if they have a terminal diagnosis and a doctor’s order indicating they have six or fewer months to live. The order is an indication that medical care is moving from trying to “cure” the patient to accepting their diagnosis is fatal and managing the pain and comfort until the person has passed.
According to Statista, in 2019, roughly 62% of hospice patients were 85 years or older, 52% were between 75 and 84, 41% were 65 to 74, and 29% were under 65.
Medicare Coverage for Hospice
Medicare and most private health insurers cover hospice care. Given the typical patients’ age, Medicare coverage is the biggest reimbursement source for hospice providers. To have Medicare cover hospice the following conditions must be met:
- The doctor certifies that the person is terminally ill and has a life expectancy of 6 months or less).
- The patient accepts that there will no coverage for curative treatments.
- The patient signs a statement that they are choosing hospice care instead of curative care.
Most private insurers align with Medicare’s requirements for hospice coverage, but check with your private insurance company if this applies to you.
Medicare covers all hospice costs. However, if you live in a care facility are admitted to a hospital, those costs will be separate from hospice. You may still have a modest copay for prescriptions.
What Hospice Does Not Tell You
Hospice providers are very honest and open, but hospice cannot tell you when the patient will die. This is not because they don’t want to, it’s because they can’t always determine it. Clearly there are cases where death is imminent, when all of the signs of imminent death are present, and hospice will tell you if that’s the case so that family can gather around and pay final respects and the individual, if desired, can die surrounded by loved ones.
The objective of your hospice team is to assist you in becoming ready for a few situations that might arise just before your loved one passes away. When a patient is terminally sick, death is never predictable.
However, a mix of symptoms and signals lets them know when the moment is near. These warning indicators won’t manifest at once, and some might never do. The body uses all of the symptoms as a means of getting ready for the end of life.
A common hospice misconception is what staff directs and controls. The hospice staff do not impose any unnecessary interventions that the individual (or family) does not wish, nor do they decide how you should use their services. It is not a pervasive advantage.
Hospice care keeps patients comfortable by controlling their pain and other symptoms, such as shortness of breath or agitation. Hospice does not hasten death or aid in patients’ passing. In reality, when patients decide to undergo hospice care, doctors occasionally discover that they survive longer than anticipated. Making sure the patient is free of the signs of their terminal disease is the goal of hospice care.
Hospice is a benefit, just like other health insurance benefits, but sadly, not everyone is aware of this, and many providers do not make referrals to hospice when they should. This is unfortunate as it can rob the dying individual of a more peaceful, comfortable departure. Of course, fear and denial of death is real, and some people see hospice as giving up hope, and refuse services on those grounds.
Anybody who meets the criteria can use the hospice benefit, not just those with premium insurance policies. Even those without insurance are eligible for hospice care from any organization that is not-for-profit or financed by the government, including Medicare, Medicaid, and practically every HMO.
How Long Does the Average Hospice Patient Live?
The patient’s diagnosis will determine the length of time they require hospice care. Most hospice patients wait to sign up until they are nearly terminal since they don’t think they will live more than six months. However, six months is the longest period of eligibility.
Many patients, nevertheless, survive through this point, at which time they could be qualified for extra hospice care or might be allowed to leave the hospital. The average length of time spent in hospice is now 78 days, up from 74 days in 2018, per a report by Trella Health. This is considered excellent news for patients because many individuals only spend a short time in hospice.
Only 12% to 15% of patients may reasonably expect to survive for more than six months, and nearly half pass away within three weeks. While individuals assigned to hospice care right away after a lengthy hospital stay had a death rate of ~95% during the first six months of their care process, patients under the age of 65 had a higher chance of living longer.
Men are more likely than women to pass away within six months, with an 88.4% vs. an 85.1% mortality rate. The cause of a patient’s admission to hospice is also important; patients with dementia or a stroke had a lower overall death rate in hospice than those with other illnesses.
Hospice Team and Caregivers
Family members (and others) are often abruptly thrown into the position of caretaker when someone is dying, frequently without any planning or awareness of what to anticipate. Hospice staff members assist the caregiver by educating them and responding to their inquiries. They can help comfort a widower, widow, or any loved one dealing with the grief.
Additionally, caregivers receive helpful suggestions, counsel, and methods to lessen the heavy load of providing care. Many caregivers claim that merely knowing they were never alone and could call hospice at any moment with a question, concern, or aid significantly reduced their anxiety.
Terminal Illness: A Hospice is Not Only for People With Terminal Cancer
Hospice patients are mostly affected by non-cancer conditions. Hospice patients diagnosed with terminally ill cancer as the main diagnosis make only a few percent. Congestive heart failure, dementia, lung cancer and stroke or coma are common non-cancer conditions in hospices. As caretakers in hospices, they are excellent at managing a patient with a disease. By definition though, hospice patients are terminally ill patients.
Hospice Doesn’t Immediately Give Patients Medications Like Morphine
Hospice providers don’t immediately prescribe patients morphine. Pain management has multiple facets that aim to alleviate a patient’s pain. Team members can even use psychological therapy to help with discomfort, including meditation or relaxation. Only when the hospice staff have exhausted all options can patients be prescribed morphine.
Top 3 Things Hospice Might Not Tell You
- Hospice may not tell you how much time they will or will not spend with the patient. Each provider and situation is different, so you must investigate and understand the daily care plan. Kaiser Health News inspected 20,000 hospice care facilities in the US during 2016. During their study, researchers have concluded that people who die at home suffer from neglect. In 2012 it was reported that more than 750 government departments were found guilty of failing in inspection procedures.
- Hospice does not tell you their complete scope of services. In some cases, senior massage and other options may be available.
- Hospice care can’t tell a patient when they will die. Hospice can help determine the length of time patients have for life, but the exact prognostic value is difficult. A professional hospice care provider specializes in the treatment of the dying patient. Hospice personnel can provide valuable emotional help for patients and their caregivers at both the beginning and the end of their hospice care.
FAQs
Is Hospice a place or a type of care?
Hospice is not a physical location, it is a description of the type of care meant to keep a terminal patient as comfortable as possible.
How old do you have to be to enter Hospice care?
There isn’t an age requirement, but always check with your insurance carrier. What is needed is a Doctor’s recommendation for hospice treatment indicating that the patient has a terminal illness with less than 6 months left to live.
How much does hospice care cost?
Medicare covers the cost of hospice services, and most private health insurance plans follow medicare’s guidelines. But, this isn’t always the case, so you must investigate your insurance plan’s covered services. Also, other care or treatments, such as prescription co-pays and being admitted back into the hospital, would not be covered or covered separately.
Do hospice services end after 6 months?
No, the 6 month mark does not automatically mean you will no longer be eligible to receive hospice services. The 6 months are actually two 90 day benefit periods, and you are still eligible for hospice care for an uncapped number of 60 day extension periods if your doctor or hospice care provider certifies that there is still a terminal illness.
Does hospice force people to stop eating and drinking?
Hospice does not make you stop eating and drinking. Your hospice care team will consult you on what is best for the patient to help them with pain relief. While hospice care was meant to comfort a dying patient, some patients were forced to eat or drink. Sometimes hospice care is misunderstood as a term used by many to describe withdrawing food or water from an individual’s diet. Although certain conditions may restrict our ability to eat food, hospice programs seek to provide food as a matter of convenience so the patient can enjoy the benefits of a soft foodstuff or liquid.
Can you leave hospice care?
Yes, you can leave hospice care, it is not a final decision. You always have the right to leave hospice care at any time.
Do I have to give up my primary care doctor in order to receive hospice care?
Thankfully, you do not. Your primary care doctor should be a core part of the hospice team, working alongside other caregivers to provide the best care possible. The goal of hospice is to no longer treat your illness, but to make your last days as pain free as possible.
Further Reading
Life is difficult. Death is even more so. If you need additional resources, consider a support group for emotional support or even grief counseling. The following books may also offer some comfort, along with more information on hospice care and hospice organizations.
- Duncan, Katie (Author)
- English (Publication Language)
- Butler, Katy (Author)
- English (Publication Language)
- Jimenez, Gabrielle Elise (Author)
- English (Publication Language)
Do you have experience with hospice? What, if anything, did hospice not tell you? How was your experience? Please share in the comments section.
20 comments
I lost my husband to cancer 6 months ago. Previously we, as an extended family have had hospice care for so many people and so many ages. My husband was 61.
The nurses were extraordinary. There end the accolades. He arrived home on a Saturday. No supplies available until Thursday. The nurses were visibly freaking out over not having enough pain medication to cover the weekend.
Towards the end as he was more compromised the team wasn’t on top of things. The nurses were helping to their ability. They were NOT backed up. We, the family were promised pain medication would arrive during the middle of the night. No one slept but it never came until the following late afternoon. He was begging for help, in excruciating pain but unable to swallow a dissolved pill.
The priest (we chose Catholic Hospice because of our faith) was so over extended that it took him 36 hours to come, I had personally told him my husband was very near the end. The poor man arrived after my husband had gone.
My children and I expressed our disillusionment while there was time. Hospice did nothing to make things better. I was personally told they would call me and tell me the changes in procedures that were made. Never called. They apologized and saw their error. That and 25 cents gets us nowhere. I wanted to know that another patient/ family of patient would NEVER have to go through anguish that could have been avoided simply by making sure the patient has is medication available when needed.
Again, I can’t stress enough how caring and loving the nurses were. The company, as such was worse than bad. To me, the saddest part is that they have Catholic in their name.
Thank God for hospice my brother in law passed away 6 years ago with lung cancer it was so very hard to see him go through this hospice was amazing and helped my sister in law very much !!! we also had hospice when Dad passed almost 20 years ago they were very helpful and made them process so much easier!! I say Thank God for hospice care!!
My husband was discharged home with hospice due to advanced lung cancer with life expectancy of around 60 days. I had done hospice work as an RN and knew what to expect. Our hospice nurses were very supportive as well as the social worker and pastoral care. My only concern was when they would send two aides to bathe him. He was extremely unhappy with this. I explicitly told them only one young lady could help him in the bathroom and the other young lady could change his bed linens. The nurses definitely were very responsive to helping control his pain as his cancer had metastasized to his brain, liver and bones. I was very grateful for their help and support. They definitely made a positive difference for us. I lost patience with him sometimes because he didn’t want to ask for or accept help. He died at home after having family members come to see him one last times. I wish more people would accept the help sooner so that they can be better prepared when the time to let go.
I’ve had 5 personal experiences with Hospice care for family members, ages 35 to 90, whose final illnesses included cancer, congestive heart failure, cirrhosis of the liver, and Alzheimers disease. To say that I’m a huge fan of Hospice is an understatement.
In my parents’ cases, Hospice made it possible for us kids to help care for them at home to the end, or nearly so.
Hospice helped my sister and elder-care facility staff manage the difficult final weeks for my brother-in-law, whose mind could no longer understand the world around him or what was happening to him.
When my brother’s mental and physical suffering became unbearable, Hospice doctors and staff (at my brother’s direction and with his clear consent), administered closely supervised palliative sedation so he could die peacefully.
My beautiful daughter-in-law could not accept that nothing more could be done for her and so, sadly, did not want Hospice to be involved as soon as her caregivers could have used their expert help — but what 30-something new mother could have reacted differently?
Hospice staff had unending patience.
They answered all our questions. Sometimes over and over.
They managed to always be available by phone or in person.
They helped us take the lead in caregiving by teaching us how to feed, bathe, dress, turn, lift, and change sheets and diapers for our loved ones.
They helped us manage and administer medications and oxygen.
They helped us worry less so we could listen, love, hold, and just “be there” more.
They did not force their opinions or religious beliefs on us.
They let us grieve and celebrate and cry and laugh without insinuating themselves into our loved ones’ dying process.
I’m so thankful for Hospice.
I have nothing but praise for the hospice team my husband had. Without them I never would have made it through all the tough times. Watching a loved one die and knowing you can’t do anything is horrible. The Nurse and caregiver we had were first rate. A big thanks to all of them.
My husband was released to hospice after 7 grueling months in a hospital/ rehab fighting leukemia. He told me two weeks before he died -“I know I’m dying ”. Hospice was extremely helpful. He died in our home within a week. The morning he died the hospice nurse said he probably had less than a day to live. When she left, I went back in to sit with him and he was gone. She hadn’t even left the parking lot. They were extremely knowledgeable and good at explaining the process. I was grateful I was with him the last week. I was fortunate he didn’t suffer long.
My father was put in hospice care 3 years ago. It was just a few months before he passed. His primary doctor would no longer see him. And the hospice care givers basically just came by to see if he was still alive. They would not administer any medications. That was all on me, his daughter. I can honestly say I didn’t get any more help than I had before hospice. I hope I don’t have to put my children through that experience.
I am a retired hospice chaplain and I would add that spiritual care is a vital part of the hospice care team. I worked with the patient and family’s faith tradition and their existing spiritual support through their clergy person. There were times when spiritual support did as much for a patient of family member as pain medications or other interventions. One comment I frequently heard from loved ones at funerals and memorial services was how much they appreciated the hospice team and that they truly wished they had called hospice sooner. It was a privilege to work in the field alongside medical personnel, social workers and bereavement support staff.
My family dr recommended hospice for my husband who was diagnosed with alheimers and lung cancer. I was shocked by her recommendation but said if she thought that was best I would agree. After A few years dealing with his symptoms and the constant state of helplessness, Hospice came in and the weight of the world was lifted from my shoulders. It was the best thing for my husband and for me. I cannot e rr thank them enough for all their help. They certainly angels that walk amongst us
Thank you for sharing your experience Lois.
If you volunteer to take care of a dying family member in their home, GET READY. YOU are reaponsible for everything. Their food, safety, toileting, med administration.
No one is going to pay you for your time, if you break your back doing it, etc. If you are not the DIRECT BENEFICIARY in the will, you will get NOTHING for your time and hard work. If a family member promises you will once the estate is settled—they are lying to you.
I am a registered nurse and left my ICU job to care for my grandmother in her home. She was 102, alcoholic, demented. Broke my back had to have surgery after she died. She literally beat me up until she died—I had bruises all over me from her. She died swinging and spitting and cursing at me. I got NOTHING but CDIFF, spinal fusions and lost time from work from taking care of her. No one in my family would help ME or reimburse ME for a CENT. She left everything to the MEN in the family. Now I am disabled trying to work as much as I can. Do not care for your family on hospice unless you get it in writing up front you will be paid. I tried to get a lawyer after the fact and no one would take my case.
That’s very difficult, and sadly, not that uncommon.
I’m caring for my father in law and the same things are going on. I need a spinal fusion in my neck and back. I already had back problems from a wreck and being a cna.I don’t have a choice. My fiance was kinda thrown into it also after his dad had a stroke and left him as POA. I have to watch him during the day and my fiance at night so we dont get to spend time together or with my kids. I am so depressed He left his job to care for his dad and his sister hadnt lifted a finger. Neither have his dad’s siblings. His insurance won’t pay for a nursing home.
am a medical assistants and working 20 years in home care i had only bad experience with Hospice care and staff .
mostly they come and take over the dieing whole house and boss around everyone in the home .
sadly families i have worked either u left or we had to cancel hospice to come because they just not very professional .
i have many stories w nurses who are in the wrong place to work they sued never be allowed to work w people.
Family caregivers have 0 rights, less than an illegal worker! In fact anything a family caregiver is given / earns / inherits is presumed the result of undue influence and it is incumbent upon you to be able to demonstrate it was not. I was a caregiver 8 yrs, 3 were 24-7. We had a $2.3 million cash trust irrevocable, she revoked it secretly while using me 24-7 365 for another year, I discovered after she died leading me off a financial cliff and probate battle with sister who despised them her entire life ignored them. The government awarded $144,000 for every year an illegal worker provided 16 hour days 6 days a week , me they said sorry don’t get involved in family.
My fiance was 33 when he was admitted I to hospice. He battled years of hardcore intravenous drug addiction that finally took his life. It was the hardest thing I ever had to do was to watch the man I love and was supposed to spend my life with dye slowly. He never regained consciousness so it was hard not knowing if he was able to hear me when I spoke to him, the Hospice staff were a huge help because I had so many questions like when will I know when the time is near. They were very open and honest with me and gave me the general what to look for signs which helped a lot. but no matter how much help they were his death was still sudden and very hard to accept. it’s been 3 years and it hasn’t gotten any easier just manageable
Thank you for sharing your story. So sorry for your loss.
It was a very difficult adjustment for my late husband to begin hospice. After the initial meeting with hospice I was overwhelmed by all the information I was given and supplies that began arriving at our apartment. It was so difficult to see cases of diapers and absorbent pads being delivered. These things were a tangible indication of what was to come. And it was terrifying, knowing what that at some point my husband would need diapers. A hospital bed was brought in, which I had fought but finally agreed to. The hospice workers were amazing. Truly, they were angels. But switching my mindset from healing to comfort was a difficult one. Phrases such as, “we shouldn’t do this or that because it would prolong his life” we’re very difficult to accept. All that said, I’m very glad that we did hospice and wish we had started it earlier. If it’s in your home, be prepared for having to do additional tasks—administering more medications, adjusting the patient’s position regularly, changing diapers, washing the patient, etc. The last few weeks of my husband’s life were very stressful and exhausting for me— but pain free and peaceful for my husband, which was the goal and the most important thing during that time.
Thank you for sharing your story.
My siblings and I took care of my dad in hospice at home. In the beginning, with the help of a hospice nurse and social worker we convinced my dad to accept palliative care with the idea he could stop it at anytime. Really what was happening was hospice. My siblings and I took turns staying with my dad and sometimes a couple of us would stay. At first things weren’t too bad but as time passed of course it became more difficult let alone watching him change so much. We were all very thankful for hospice care. They were angels! My dad was under hospice care for not quite 7 months when he passed. I helped my aunt throughout her time in hospice so I wasn’t a stranger to it but I will say things progressed a little differently for both of them. It certainly didn’t make things any easier to see my dad wither away once he lost his appetite. Thank God for hospice care. Sorry to hear of some who had bad experiences with hospice care teams.