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I consider myself to be reasonably intelligent, but I continue to struggle with understanding the FUNCTIONAL differences between “hospice“ and “palliative care“, and routine medical care.

Both of my parents were in hospice prior to their deaths. My father was in hospice for 10 days before his death. My mother, conversely, was in hospice for close to a year. Because hospice mandates a six month expected length of life, she had to be reevaluated and reapproved for hospice after the first six months. Pretty cut and dry.

The goal of palliative care is to help people with serious illnesses feel better. My husband has been recommended by several healthcare professional friends/relatives for palliative care. He does not have any illnesses. He has a SCI injury from 45 years ago, and as a result of a broken femur, severe pressure sores from the hospital, and a bout with esophagitis, and nerve pain, he has been mostly in the bed for 4 years. With the exception of the neuropathy, he has recovered from the other issues. We are presently in a taper for him to get off of the opioids, are setting up appointments for a neurostimulator, and physical therapy and occupational therapy will begin as soon as the environment permits doing it safely.

I have no problem with the terms “hospice” or “palliative care”. But I have to say I’m not sure I understand why my husband needs palliative care versus regular medical care.

When I research the two terms, the nuance is hard for me to pick up on. I’m looking for an explanation of what the treatment/care actually looks like for each situation. I totally get hospice, because I’ve been through it twice, and my niece is a director of three hospice facilities as well as home hospice. But what is the difference between palliative care and regular medical care?

I found this quote regarding palliative care… “ The goal of palliative care is to help people with serious illnesses feel better.” Is that not also the goal of regular medical care? To make people better?

Or is the difference to make them “feel“ better whether or not they actually “get” better?

Am I even making any sense? Can somebody help me understand the difference between palliative care and regular medical care? And what each would actually, functionally encompass?

[This message edited by WhatsRight at 7:53 AM, June 20th (Saturday)]

I am no expert at all... but here is my take. Palliative care begins when the patient is not expected to fully recover. The goal is quality of life and making them comfortable rather than on treatments that will “cure” them. My husband is at home in palliative care...the doctors manage his symptoms and pain...but there is no treatment that will improve his final outcome, thus it is palliative not regular medical care.

The dictionary definition of palliative is:

palliative: serving to palliate.

palliate: to relieve or lessen without curing; mitigate; alleviate.

Palliative care is the phase of treatment where emphasis changes from trying to cure a condition to pain relief, making the patient comfortable without treating the underlying condition.

Hospice can be in-patient or in-home. In both cases you need to have a diagnosed terminal condition where you are expected to die within a relatively short time (depending on the facility and insurance less than 6 months or something like that).

So to answer your question: yes, palliative care is to make the patient 'feel' better and not to 'get' better.

My mother stepped down from palliative care to hospice last year. Passed away in hospice. I had a hard time grasping the difference, also.

My mother was 90, and as long as she was in palliative care, they treated a heart condition that she had for years. It is what brought her into the hospital to begin with. They stepped her down from medical care to palliative. Once she stabilized, they transferred her to hospice, where there were no heart monitors. Palliative care requires skilled nursing or equipment that cannot be handled at home. Should another medical problem present itself, they can upgrade from palliative to medical...

Medical care is for a cure, palliative care is for treatment, and hospice is for comfort.

Palliative care requires skilled nursing or equipment that cannot be handled at home.

This is not true. People have palliative care at home all the time. One of the goals of palliative care is to have someone (usually a nurse) checking in with the patient, specifically at home (whatever home is for them... skilled nursing facility, senior living, assisted living, house) so as to minimize doctor's appts., hospitalizations, etc. The nurse is then in communication with the patient's physicians, and their care is guided through the physicians based on these visits.

It can also be used to monitor patients with some multiple chronic illnesses and coordinate care in the home, such as PT, OT, lab draws, equipment, etc. People can continue treatments, such as chemo, radiation, etc. while still on palliative care.

Hospice is brought in when a prognosis is expected to be death within six months. Now, a lot of people on hospice can live more than six months, but the hospice team has to be able to document a decline (weight loss, cognitive issues, strength, etc.). As long as they can document a decline, the person can continue to stay on hospice. You need to be recertified every 90 days for the first two certification periods, and thereafter, every 60 days. These are called benefit periods. And yes, people can graduate from hospice if they stabilize (for instance, someone with failure to thrive all of a sudden begins to gain weight, become more active, etc.). The only thing allowed in hospice that can be considered treatment, is radiation if it is intended to provide pain relief.

I work in a hospital and work closely with the Palliative Care Team. Like others have said, palliative goals are comfort, not cure. Like when you have been diagnosed with an incurable cancer, you may still get treatments to feels better knowing they are not curing anything. Say bone mets, radiation may temporarily shrink them to relive pain, but not actually treating the underlying cancer.

It also has a more lenient approach to narcotics. They can prescribe much higher doses.

Thanks for all the information.

I think I mentioned before that my husband has been hurt over 45 years. Spinal cord injury at the fifth and sixth cervical vertebra. Until the past 4 to 5 years, he has been very independent. Owned his own business, traveled around the world alone competing in wheelchairs sports, Olympic gold medalist, drove his van, changed his clothes, provided all of his own self-care.

In the last few years we have been battling various health issues, but he is not sick in any way. We are tapering off of his opioids, plan to get a neurostimulator for his chronic neuropathy, and have physical therapy and occupational therapy come in to help rebuild his strength.

So I am wondering why has it been suggested to us that he be in palliative care, Since the only “ongoing condition/illness“ he has is his spinal cord injury. Causes of death for such an injury include decubitus ulcer‘s (pressure sores), urinary track infections, and pneumonia.

But it’s not like he has an illness that is going to be the cause of his death. Just possible complications.

This is why I am a bit confused about the suggestions for him to seek out palliative care.

Again, I’m a big fan of hospice and palliative care. And we will probably most definitely use one or both by the time we are toward the end of his life. But I’m not sure why the push for it now.

Any ideas about this? Or am I missing the point somehow?

I ask because so many doctors do not understand about spinal cord injury. Our primary care physician has admitted as much.

I’m assuming that may be because he has had some health issues in the past few years, doctors are thinking this is the beginning of the end? But at this point, his chronic issue is pain. So if the neurostimulator works, and he is off of the opioid painkillers, and regain some of his strength so that he can independently push his chair again, I would actually guess that he would live longer than me. Due to all of his athletics throughout the years, his heart has got to be much stronger than mine.

[This message edited by WhatsRight at 9:55 PM, June 20th (Saturday)]

So if the neurostimulator works, and he is off of the opioid painkillers, and regain some of his strength so that he can independently push his chair again, I would actually guess that he would live longer than me.

If he doesn't qualify for palliative care, then he won't get it. Someone, somewhere along the way thought he could benefit from it. It's like having another set of eyes and ears in the home. If he qualifies, then starts doing better, they will discharge him. I wouldn't look at palliative care as the beginning of the end, by any means.

By the way, I used to work for a hospice agency that also offered palliative care. Yes, it can be confusing, but it's always worth the assessment, then you can decide if you want what they have to offer or not.

Palliative care requires skilled nursing or equipment that cannot be handled at home.

This is not true. People have palliative care at home all the time

Sorry. Did not mean to misinform, but, truly, this is the way it was explained to me. All my experiences with palliative care where I live have been within the confines of a hospital setting. Good to know ....thanks.

I (not a skilled nurse) administered palliative care at home to a dying friend. We did in-home hospice, and they just delivered the morphine prescription to our home and I gave it to my friend at the prescribed times. It was oral.

Sorry. Did not mean to misinform, but, truly, this is the way it was explained to me. All my experiences with palliative care where I live have been within the confines of a hospital setting. Good to know ....thanks.

Remember everyone here is from a different state or even country. There may be completely different regulations where you stay.

The best thing to do is to discuss it with your husband's doctors to see why they want to shift his care to palliative.

The best thing to do is to discuss it with your husband's doctors to see why they want to shift his care to palliative.

And to explain what 'palliative' means in a way that you understand.

We have definitely spoken with our PCP who is also a friend, about palliative care, with regard to his chronic pain, and the fact that palliative care could put a morphine pump in his spine and it would be 1/10 of the medication with 10 times the pain management.

But right now we are in month two of a taper off of opioids. He has reduced his Fentanyl by 50% and Oxycodone by 25%. He says that his head is clearing up and not so “cloudy“. He is talking more. He had a three hour visit from his sister yesterday. He is actually making conversation with me!

So I am guessing that the doctors we spoke to about palliative care were thinking that he would always only need to increase his pain management. I’m hoping the neurostimulator will take care of a large portion of that pain.

As I said, I’m totally open to it… But the lines are blurry. I’m so thankful that hospice and palliative care exist. We definitely will have it on the back burner for use when needed… Just probably at a later time.

Thanks for all your input.

Okay, often palliative care and hospice are the same. Many people on palliative care are dying and would benefit from either service.

However, palliative care can give medical support to those people that are suffering from chronic long term and chronic conditions that are not actively dying. They can provide home support or support in care facilities that can’t be provided by lay people and care facilities are often hesitant to provide some of the supportive care that these people need.

Neither service means that you have to give up hope, hospice is just intended for those people who have a limited life expectancy.

You can get an evaluation for palliative care and they will tell you if you qualify and what services they provide.

You know how difficult that it it to navigate the medical community under the best of circumstances, right? Palliative care and hospice can cut through a lot of these issues and get you the services that you need much more quickly.

Both services offer support to the family of their client as well, which is not to be underestimated.

I haven't read the results, because I have a meeting to get to in a few.

But here is how I tell patients and family.

Hospice is end of life care. There is no curing what is wrong, and the overall focus of traditional medicine is getting well, so the focus changes from getting well, to making sure that the time that is left is good, pain is managed and (here is the difference between Pall Med and Hospice) all aggressive care stops. So no new hospitalizations, no surgery, no aggressive new treatments like tube feedings, or vents etc.

Palliative care is really the only focus is on quality of life and pain management. It is defining the goals of care for the patient, family etc, and really working toward making sure pain is well managed, and that the patient truly has everything they need to have a high quality of life, and good pain management.

There is a fantastic book written by a Dr who chose to go into Pall med and her experiences, and how she goes through the training, and overcoming the struggles of poor understanding of what Pall Med is, and helping to educate patients and families what it means and how it helps. It is called That Good Night by Sunita Puri.

Personally I think your spouse is the ideal candidate for Pall med. He has chronic pain, neuropathy, and quality of life is not what it could be. So how to get more quality? The Pall med team could definitely help.