When hospice is called in, it means that in home or inpatient care will be provided for the patient and caregivers. For hospice home care, it means nurses, social workers, doctors and clergy come to your home. It means that medicine and medical equipment will be sent to your home. But it does not necessarily mean that the person on hospice has 6 months or less to live.
An excellent definition of hospice is…
Hospice care is a type of health care that focuses on the palliation of a terminally ill patient’s pain and symptoms and attending to their emotional and spiritual needs at the end of life. Hospice care prioritizes comfort and quality of life by reducing pain and suffering. Hospice care provides an alternative to therapies focused on life-prolonging measures that may be arduous, likely to cause more symptoms, or are not aligned with a person’s goals.
Wikipedia.org
Most people think that calling in hospice means that the end is near in someone’s life. But the truth is, that hospice services can be used for much, much longer. So, don’t be afraid of calling them!
The hospice program provides both palliative care and comfort care.
- Comfort Care – is meant for anyone who has decided to stop medical intervention for a chronic illness or if the physician has stated that no other treatment is available and the patient has accepted that.
- Palliative Care – is meant for anyone with a life-threatening or terminal illness (but does not necessarily mean that they are 100% dying). So, your physician could say you have a 20% chance of surviving this disease – with this you could qualify for palliative care.
The main difference between these two is that you if have the possibility of surviving your diagnosis then you would be eligible for palliative care. If your physicians have determined that nothing else can be done and that you will not survive your diagnosis – then you would be eligible for comfort care.
If you or a senior loved one is diagnosed with an illness that will progressively get worse (i.e. dementia, Alzheimers, congestive heart failure, liver disease, stroke, etc.) and there is no known cure for that illness, then you are most likely eligible for hospice services.
My mother had pulmonary fibrosis which she had for 10 years. It’s a progressive disease and her only symptom was that she felt more tired more often and would sometimes need oxygen. Otherwise, you would never know there was anything wrong.
She lived much longer than most individuals with her diagnosis and as she was demonstrating increased levels of exhaustion and the need for oxygen – those were clear signals that her disease was progressing. All of this made her eligible for hospice.
I do want to also say here that every hospice program is run a bit differently – so please contact your local hospice programs for information on their particular policies.
How Long Does A Patient Have When Hospice Comes In?
Traditionally, hospice is called in when physicians have determined that the patient has 6 months or less to live but the reality is that just because someone is diagnosed with a terminal illness – the remaining length of their life could be much longer than 6 months.
The nurse that took care of my mother told us that she has had patients under her care, in hospice, for up to 3 years.
Most people think that once you enter hospice, it means that you are only going to live a few days to a few months. But that simply is not the case.
What makes it so difficult to get true numbers about hospice patients is that most people only call them in when it is very apparent that the patient will be dying soon. But honestly, the caregivers / family could have more than likely called hospice in much, much sooner.
Now, there are 2 different kinds of hospice programs…
- in home care (which is what I am mostly talking about here in this article)
- inpatient hospice units
Inpatient hospice care is at a facility strictly for hospice patients. They can be stand alone buildings or incorporated as part of a medical complex.
“…all hospices must offer inpatient care for 24-hour pain control or acute or complex symptom management that cannot be provided at home or in other settings. Inpatient care is provided in a facility—often a hospital, but also nursing facilities and free-standing hospice houses—that can provide round-the-clock clinical care.”
Vitas.com
Most oftentimes – but certainly not always – someone who is admitted to an inpatient hospice program is much closer to their end than not. Again, I stress that this is not always the case.
What Happens When Hospice Is Called In?
I will give you the experience that my family and I had when we called in hospice for our elderly mother.
- An appointment was made with a hospice social worker to come to my mother’s home.
- She took her time to speak to my mother and my sister and I (but mostly my mother) about why she was there and to calm my mother’s fears.
- She very patiently explained the services that hospice would provide, what we could expect, the benefits and the cons.
- We learned that hospice would send us equipment (as needed) such as…
- shower chair
- hospital bed
- oxygen
- wheelchair
- walker
- crutches
- blood pressure monitor
- lifts (to help us caregivers lift my mother off the bed)
- kidney machines
- They also would provide supplies (as needed) such as…
- bandages
- catheters
- medications
- The services that were included were…
- nursing care
- doctor care
- social worker services
- clergy visitations
- aide and homemaker services
- physical therapy
- occupational therapy
- speech language therapy
- dietary consultation
- grief counseling (for my mother and us)
- symptom and pain management
- volunteers (to help sit with my mom if we needed to get out for any reason)
- and there were more – I just can’t remember them all
- The limitations that were presented to us were…
- My mother had multiple doctors as most elderly do – hospice would only pay for one and that one doctor had to be willing to work with hospice (apparently not all do) So my mother chose her general practitioner.
- If my mother wanted to see any other medical professional – she could – but it would have to be paid privately.
- Hospice would not pay for all my mother’s medications. If the hospice doctors determined that any particular medication was no longer effective in treating the diagnosis of pulmonary fibrosis then that medication would be not covered. Also, my mother used prescription eye drops for her dry eye syndrome and that was not covered.
You can read more about medications under hospice in this PDF from the Hospice Association Of America - The particular hospice program that we used required my mother to sign a DNR (Do Not Resuscitate form). Not all hospice programs do. This was very difficult for my mother and initially, it was the stumbling block that kept her from signing on with hospice right away. It took a few days for my mother to take in all that was happening but eventually, she did sign the papers.
- The social worker told us that we could go in and out of hospice – in other words – if my mother decided a week later that she wanted out of hospice, it would be as easy as making a phone call and signing a form. If she then decided the next month or day or week later to come back into hospice – it would be just as easy to get back in.
- We were told that we would be given a box of medications (that box included morphine, meds for nausea and other drugs) that we could use and the nurse would help us if and as we needed it.
- We were given a card to put up somewhere near a phone that had the phone number and the unit we were assigned to so that when we had to make a phone call – that’s the number that we would call and we would give them our unit number so they could reach the proper team that we were assigned to.
Here is a link to a great PDF by Medicare.gov on the Medicare Hospice Benefits.
All in all, it was a very good experience.
When Should Someone Be Offered Palliative Care?
Palliative care can be provided at the very beginning of a diagnosis and/or when you begin your treatment for that diagnosis. The rule of thumb is that the sooner you begin palliative care, the better.
“Palliative care is specialized medical care for people living with a serious illness. This type of care is focused on providing relief from the symptoms and stress of the illness. The goal is to improve quality of life for both the patient and the family.
Palliative care is provided by a specially-trained team of doctors, nurses and other specialists who work together with a patient’s other doctors to provide an extra layer of support. Palliative care is based on the needs of the patient, not on the patient’s prognosis. It is appropriate at any age and at any stage in a serious illness, and it can be provided along with curative treatment.”
Getpalliativecare.org
The reason it’s better to call in palliative care sooner than later is simply because the quality of your life will be better (not just for the patient but for the caregivers as well). The amount and type of support that you will receive will help you through this very tough time.
And just a side note here – you may be wondering how to pay for hospice or if hospice takes your assets to pay for care. In general, most insurance plans (including Medicare and Medicaid) cover all or part of palliative care.
Read more about the Pros And Cons Of Hospice.
Is Hospice Only For The Dying?
Hospice is not necessarily for those who are dying right away. Hospice is intended for persons who have been diagnosed with a terminal illness. That does not mean that they will die right away – it does however mean that their illness has no known cure.
Although the diagnosis that got you eligible for hospice may be grim – the truth is that patients DO get discharged from hospice because they’ve gotten better.
So, does going into hospice mean that you are absolutely, 100% going to die from this illness? The answer is NO.
For more information about when to call hospice – click here.
How Do You Know When It’s Time For Hospice?
When my sister and I asked my mother’s physician if we should call hospice his response was an absolute “No”. He told us it wasn’t anywhere near that time. But we called hospice the very next day.
My mother passed away 6 months after he told us that. He may have thought that hospice was only for someone in their last few days – but that is not true.
Read our article on How To Communicate With Your Parent’s Doctors.
When is hospice called in? It’s a judgement call – when to call in hospice but in my experience as both an Occupational Therapist and a caregiver – I would strongly recommend that a hospice consultation be called in as soon as possible.
It costs nothing to get an evaluation and IF you or our elderly loved one qualifies for hospice – then your life as a caregiver, and the life of your senior loved one should improve!
But if you want some kind of specific guideline, I would say that hospice should be called in when an elderly loved one’s health and ability to perform tasks is declining. It does not mean that they are going to die within the next few days.
I should also mention that there are certain criteria that must be met before a dementia patient can be admitted to hospice. In general, the person must be in the final stage of dementia (Stage 7) before they are placed under hospice care. But it never hurts to request an evaluation once the person reaches the moderately severe stage.
“You should call hospice if your loved one is experiencing any of the symptoms below:
- frequent visits to the ER or hospital admissions
- a decline in their ability to perform daily tasks including eating, getting dressed, walking, or using the bathroom
- an increase in falls
- changes to their mental abilities
- progressive weight loss
- skin tears, infections, and other signs of deteriorating health” – crossroadshospice.com
Recommended Books
Here are some books that I can recommend for you to read up on the topic of Hospice.
A beautifully written book that can help you through the journey of a hospice program.
A must have for anyone considering volunteering with Hospice but also for caregivers who are working with hospice to care for their senior loved ones.