Wife's oncologist has stopped treatment, is recommending hospice

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rupalb9
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Wife's oncologist has stopped treatment, is recommending hospice

Post by rupalb9 »

I am not seeking medical advice.

My wife has a history of metastatic breast cancer. Her treatments over the past two years have not stopped the progression of the disease. Her oncologist has stopped treatment because he feels that she is no longer able to handle the rigors of the regimens. She is going to be starting on (original) Medicare (Plan B) next month, a few months shy of her turning 65.

The doctor is recommending that she go into hospice care. The way he explained it, she will have access to all of the benefits of medicare care except hospitalization.

We are trying to figure out the nuances of all of this. I would appreciate any guidance from the forum members regarding palliative care and hospice care.

We are located mid-peninsula in the SF Bay Area.

Thank you.
Pierre Delecto
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Re: Wife's oncologist has stopped treatment, is recommending hospice

Post by Pierre Delecto »

rupalb9 wrote: Sat Feb 08, 2020 9:47 pm I am not seeking medical advice.

My wife has a history of metastatic breast cancer. Her treatments over the past two years have not stopped the progression of the disease. Her oncologist has stopped treatment because he feels that she is no longer able to handle the rigors of the regimens. She is going to be starting on (original) Medicare (Plan B) next month, a few months shy of her turning 65.

The doctor is recommending that she go into hospice care. The way he explained it, she will have access to all of the benefits of medicare care except hospitalization.

We are trying to figure out the nuances of all of this. I would appreciate any guidance from the forum members regarding palliative care and hospice care.

We are located mid-peninsula in the SF Bay Area.

Thank you.
I’ll have to defer to others to provide guidance as I have no expertise. I’m just really sorry to hear about what your wife and you are going through. I hope you both can find peace and connection through this time. Prayers and well wishes to you both.
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ResearchMed
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Re: Wife's oncologist has stopped treatment, is recommending hospice

Post by ResearchMed »

rupalb9 wrote: Sat Feb 08, 2020 9:47 pm I am not seeking medical advice.

My wife has a history of metastatic breast cancer. Her treatments over the past two years have not stopped the progression of the disease. Her oncologist has stopped treatment because he feels that she is no longer able to handle the rigors of the regimens. She is going to be starting on (original) Medicare (Plan B) next month, a few months shy of her turning 65.

The doctor is recommending that she go into hospice care. The way he explained it, she will have access to all of the benefits of medicare care except hospitalization.

We are trying to figure out the nuances of all of this. I would appreciate any guidance from the forum members regarding palliative care and hospice care.

We are located mid-peninsula in the SF Bay Area.

Thank you.
Without heading into medical care, have you spoken with anyone at any hospice services, or other types of possible/recommended care to find out what they say/recommend? Or what the choices might be?
Likewise, you might try checking with the patient services office at her hospital, if she has received inpatient or outpatient care.

Our thoughts are with you both.

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Cubicle
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Re: Wife's oncologist has stopped treatment, is recommending hospice

Post by Cubicle »

Prayers & thoughts with you OP.

Speak with a hospice provider. 2-3 actually. There are many that provide services. As with long term care, be careful about how you sign documents, if you are signing for her. There are nuances that can make children liable for parent's expenses; you being a spouse I'm not sure if such knowledge is needed, but wanted to put it out there.

Would also recommend a sit down with your social security office about Medicare. Or a social services worker. Or an estate attorney.
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123
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Re: Wife's oncologist has stopped treatment, is recommending hospice

Post by 123 »

A thread from last year discusses some of the issues with Medicare and hospice. Note there are issues as well for Medicare Advantage enrollments.viewtopic.php?t=278349

If you are searching for hospice services I would advise contacting them directly and individually. If you use a referral service like "A Place for Mom" you will likely be bombarded with calls from individuals who collect fees from facilities for bringing them a "placement". Hospice services can be provided in a number of locations your home, an assisted living facility, or a nursing home. There are some stand alone hospices that provide hospice services to all residents. While hospice services themselves may be covered by Medicare the daily room/board/care charges may not be. In some areas of California there can be HMO providers, like Kaiser, that may operate their own hospice facilities.

You should ask your current health care provider about how their coverage works with Medicare and hospice. They may have established arrangements with hospices. Depending on the area demand for hospice can exceed supply and alignments and connections through an existing health care provider can be helpful.
Last edited by 123 on Sat Feb 08, 2020 10:18 pm, edited 2 times in total.
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retire2022
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Re: Wife's oncologist has stopped treatment, is recommending hospice

Post by retire2022 »

rupalb9 wrote: Sat Feb 08, 2020 9:47 pm I am not seeking medical advice.

My wife has a history of metastatic breast cancer. Her treatments over the past two years have not stopped the progression of the disease. Her oncologist has stopped treatment because he feels that she is no longer able to handle the rigors of the regimens. She is going to be starting on (original) Medicare (Plan B) next month, a few months shy of her turning 65.

The doctor is recommending that she go into hospice care. The way he explained it, she will have access to all of the benefits of medicare care except hospitalization.

We are trying to figure out the nuances of all of this. I would appreciate any guidance from the forum members regarding palliative care and hospice care.

We are located mid-peninsula in the SF Bay Area.

Thank you.
I hate to be bearer of bad news, it mean there is no further medical treatment available for your spouse. My cousin's husband went through colon cancer, and treatment stopped and he was sent to hospice, so that he can live out his remaining days. He unfortunately passed within three weeks of entering hospice. I am not a doctor, this is first hand experience.

Best
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neurosphere
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Re: Wife's oncologist has stopped treatment, is recommending hospice

Post by neurosphere »

Not medical advice, but just yet another point of view, maybe?

There are certainly situations where hospice is not "giving up hope" but rather admitting that the end will be happening sooner than one wishes. Hospice can be an empowered decision about how to live out remaining time. There are studies which show that with certain cancers, those who choose hospice live a longer life (and subjectively a better life) than those who choose otherwise.

Sending virtual hugs your way.
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Rudedog
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Re: Wife's oncologist has stopped treatment, is recommending hospice

Post by Rudedog »

So sorry to hear of this, prayers for you and your wife. Friend of ours in chemo now. Cancer is a tough foe.
quantAndHold
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Re: Wife's oncologist has stopped treatment, is recommending hospice

Post by quantAndHold »

In California, call HICAP. They are super helpful at explaining all the Medicare options.
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Theratking
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Re: Wife's oncologist has stopped treatment, is recommending hospice

Post by Theratking »

I have had both my parents go through hospice. Professionally, I work in the health care system in elder care areas, also, I am on a board of directors for an elder care organization. Perhaps the biggest mistake I see is that people wait too long to get into hospice and it makes for a more difficult time for all involved.

I would start by asking the social workers at the hospital for their suggestions provided you have a good relationship with the hospital.

My parents used two different providers there was differences in care. My fathers, I felt was much better. In both cases we chose in home hospice. Nursing homes, LTC centers and hospitals can be alternate providers.

It all really works around your central/admitting nurse. The more involved and empathetic they are the better things run.

They will provide almost everything. Medications, supplies, dme, hospital beds, oxygen, etc. Do not be embarrassed to ask. Many times they do not realize the problem you are facing. I find a journal is very useful, it helps you articulate questions when different providers are coming in and out.

They will also provide counseling and pastoral care to family members as well as the patient. An important consideration is to let the loved ones friends know. Many will come by to see them. Some will send flowers, etc.

My personal view for each of my parents was never to say no to what they want. Ice cream for breakfast on Monday? Sure why not. We essentially converted 1 room in my house into a hospital room.

We also hired at home health aides/assistants. It can be overwhelming the number of people coming and going. This allows for some normalcy in the care givers/families life.

I wanted this to be as good of a time for my family as possible. I made every effort to provide as healthy of an environment for my children as well as my parents.

I know this is a difficult and uncertain time. I hope that your family has a good journey. God Bless You.
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Re: Wife's oncologist has stopped treatment, is recommending hospice

Post by obgraham »

It sounds to me, OP, that she has reached the stage where she snd you should be planning the quality of her remaining days, rather than focusing in the quantity.

This is what hospice does. Usually quite well.
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Re: Wife's oncologist has stopped treatment, is recommending hospice

Post by Turkishcoffee »

My prayers are with you both. When my father went into hospice he was fortunate to have guidance to an excellent hospice team. One thing that really helped is knowing what is and is not covered under hospice care as “palliative care”.

While not extending medical advice, we were quite surprised that at the time 20 years ago strontium 89/ samarium 153 ( an injectable radioactive isotope that delivers low dose radiation through the blood stream to bone metastesis), in his case prostate tumors and also breast cancer bone tumors was covered as palliative.

His injection made a huge improvement in his pain and gave him a much better quality of life.

Knowing the treatments covered is a relief. It isn’t just pushing morphine for pain.

God bless you both.
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Re: Wife's oncologist has stopped treatment, is recommending hospice

Post by quantAndHold »

Yes, DW was a hospice nurse before she retired. Their goal is quality of life, and if radiation or chemo is indicated for palliative (comfort, not life saving) reasons, then hospice will pay for it. That didn’t happen often, but it did happen.
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Re: Wife's oncologist has stopped treatment, is recommending hospice

Post by celia »

rupalb9 wrote: Sat Feb 08, 2020 9:47 pm I would appreciate any guidance from the forum members regarding palliative care and hospice care.
I found this for you. Hope it answers your question:
Palliative care is for patients with chronic illness who can continue to receive curative treatments, while hospice care is for patients with terminal illness who have typically chosen to forgo curative treatments.
https://www.aplaceformom.com/blog/1-05- ... s-hospice/
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Re: Wife's oncologist has stopped treatment, is recommending hospice

Post by Carefreeap »

First, I'm so sorry for your situation. I know it must be hard on both of you.

My experience with Hospice was with my mom nearly 12 years ago to the day. She was diagnosed with stage 4 pancreatic cancer. From diagnosis to death was 41 days. I was with her nearly the whole time. She was in denial much of that time until she met with a pulmonary specialist, female and at 5' literally could look her in the eye and said "I'm horrified you're not in hospice yet". Then she got it.

Palliative care is all about making the patient comfortable and not about treatment. If an infection happened she wouldn't have been able to take antibiotics, for example. They prescribed morphine, as much as she wanted. This was before CA passed the Right to Die law and I suspected (and continue to believe) that many people in Hospice effectively choose to overdose on morphine than to continue to suffer and put their families through a lengthy dying process.

We were able to put together a 70th birthday party for my mom. She died five days later. My favorite memory of her last days was the smile on her face while her choir group sang to her. Hospice allowed her to die at home. They brought in a hospital bed (easier for weak people to get in and out of and sit up). They will arrange for a nurse and a social worker visit. They were at her house within an hour of her dying and they contacted the funeral home and arranged for pick up. They stayed with us for about an hour.

I've read that women tend to hang on through an event; e.g. a birthday, Christmas, et cetera. I suspect a positive event like that allows a person to say "goodbye" during a happier time. It certainly felt that way with my mom.

My father on the other hand has terminal skin cancer. While he's responding to immunotherapy, it's almost a shame he did. It's really dragging out the process and he keeps getting weaker and weaker and his mind is really going. We've had a family fracture and it's not a good way to go. It sure makes one think about how one wants to leave this world.

I wish you luck and peace with the process. I know I was grateful for Hospice's help.
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Re: Wife's oncologist has stopped treatment, is recommending hospice

Post by sailaway »

7eight9 wrote: Sat Feb 08, 2020 9:59 pm I have no experience to give you advice. That said, to me the question is if your wife wishes to give up hope and embrace hospice. If it is hopeless then I understand. Otherwise fight against the dying of the light. Best wishes in your decision.
Just in case you have people in your life who are facing similar decisions for their loved ones, you should know that this just makes it harder. Hospice isn't offered until it is clear that the illness is terminal, in the fairly short term. The only hope that is left is that they be as comfortable as possible, and that their loved ones have support through the process. Hospice care can go a long way to helping loved ones, as well as the palliative care offered to patient. Being told that they have some duty to fight to the last can actually lead to depression.
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Re: Wife's oncologist has stopped treatment, is recommending hospice

Post by increment »

rupalb9 wrote: Sat Feb 08, 2020 9:47 pm The doctor is recommending that she go into hospice care. The way he explained it, she will have access to all of the benefits of medicare care except hospitalization.
Talk with hospice providers. They may have a different interpretation of which benefits insurance will cover while on hospice care.

Medicare's website describes what they cover.

Prior to Medicare, how much will hospice care cost? I see on my father's Explanations of Benefits that his hospice provider is billing about $12000/month and accepting about $7000/month from Medicare (in the SF East Bay, California).
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Re: Wife's oncologist has stopped treatment, is recommending hospice

Post by InMyDreams »

So sorry to hear about your wife, and the situation your family faces.

You may want to review the Center for Medicare/Medicaid Services website that compares hospices for quality measures:
https://www.medicare.gov/hospicecompare/

I don't think the quality measures tell the whole story, but it's a place to start.

If your situation is not urgent, you have a bit of time to do some research. I'd suggest talking not only to your healthcare providers, but also people who have gone thru or are currently experiencing hospice services. If you have clergy to talk with, they may know someone in your faith community that you could talk with.
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Re: Wife's oncologist has stopped treatment, is recommending hospice

Post by nanciT »

Very sorry to hear about your wife's prognosis. I also recommend contacting several in the area, your oncologist will probably have a list for you. They are different, I have had patients that had very nurturing care, and others who felt they did not. It's best to check them out.
I have been in healthcare my entire career and have seen varied care. I am sure once you speak to a few, you will find the right one. They are there for comfort care and also support the family though the most difficult time.
Sending comfort and thoughts to you both through this most difficult journey
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Re: Wife's oncologist has stopped treatment, is recommending hospice

Post by littlebird »

My late husband had wonderful hospice care from a small, doctor-run, religion- based (neither his religion, nor mine) hospice group. They were recommended to us by the owner of the assisted living group home where he was a resident at the time. Eventually, I was able to bring him home for the final year of his life, and they cared for him there. I cannot speak highly enough of them. They gave both of us exactly what we needed, not more; not less. As with much of life, open communication was the key.
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Re: Wife's oncologist has stopped treatment, is recommending hospice

Post by the Herz »

my sister in law recently passed with cancer, after a few weeks in hospice at home after her oncologist said there were no further medical interventions possible (and after 4 years fighting). her hospice care was directed to pain relief but very little else. when she couldn't swallow hospice offered no remedy, leaving her to die more quickly from the cancer than otherwise if the truth be known. no IVs etc. the mindset of hospice is to let the process take its course with as little pain as possible. the hospice workers are wonderful people but the care is limited to only pain relief. this is a better passing than in the hospital no doubt but you have to understand that death is welcomed and not resisted
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Re: Wife's oncologist has stopped treatment, is recommending hospice

Post by desiderium »

Your wife's oncologist undoubtedly refers and helps manage many patients on hospice care. S/he will know the hospice provider landscape and make a referral for you. Contrary to what you may read or hear (even from some hospice personnel), patients do not give up any rights when they sign up for hospice. Hospice providers are paid per diem, and must cover expenses. The organizations cannot exist and pay for expensive treatments or hospitalization. While the general expectation is that patients are choosing to omit such care, they can change their minds and revoke hospice if circumstances change and if they want or need such care.

Best wishes on your journey
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Re: Wife's oncologist has stopped treatment, is recommending hospice

Post by leeks »

Theratking wrote: Sat Feb 08, 2020 10:29 pm We also hired at home health aides/assistants. It can be overwhelming the number of people coming and going. This allows for some normalcy in the care givers/families life.
+1
Assuming you can afford it, I would privately hire whatever additional help you and your wife could use beyond what Medicare will provide.
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Re: Wife's oncologist has stopped treatment, is recommending hospice

Post by Normchad »

I’m sorry to hear of this situation.

All I can say from personal experience is that the people from hospice were absolute angels. Can’t say enough great things about them, and what they did when we needed help.

As someone else said, we should have called them in sooner.
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Re: Wife's oncologist has stopped treatment, is recommending hospice

Post by smectym »

Of course you should take very seriously the oncologist’s recommendation. You should also seek a second opinion; but I would be surprised if your primary oncologist hasn’t already encouraged you to do that.

Should you and your wife finally conclude that the oncologist’s recommendation is sound, then the most important thing is to find the optimal hospice care environment, and your focus should shift way from curative treatment to palliative care. Preferences regarding privacy, pain management, religious or secular environment, etc.then become paramount. It can be hard to shift gears.

Based on experience, I would flag pain management as a potential point of conflict. Different practices and schools of thought vary widely on how to deal with pain issues in the final months. I personally prefer aggressive pain management; others differ. But it’s very important that the hospice, and you and your wife, see eye to eye on that at the outset.
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Re: Wife's oncologist has stopped treatment, is recommending hospice

Post by smectym »

As an addendum: if hospice is the next step, please be sure that the culture of the facility, down to every caregiver in contact with your wife, is one of consistent respect for the patient. Unfortunately this cannot be just assumed. I was grieved to observe that my own father, a respected editor of medical textbooks and a Ph.D., was sometimes treated with casual and sometimes vulgar disrespect in his last days, by staff who had perhaps become callous and indifferent. You will have to be vigilant in any event, but making your expectations clear at the outset and establishing a relationship with a care coordinator who can address problems should they arise is also a big deal.
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Re: Wife's oncologist has stopped treatment, is recommending hospice

Post by mancich »

Normchad wrote: Sun Feb 09, 2020 2:50 am I’m sorry to hear of this situation.

All I can say from personal experience is that the people from hospice were absolute angels. Can’t say enough great things about them, and what they did when we needed help.

As someone else said, we should have called them in sooner.
+1. We experienced the absolute kindness and care of the folks at Hospice with our mother when she died of cancer. They're great people. Very sorry for what you are both going through.
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Re: Wife's oncologist has stopped treatment, is recommending hospice

Post by dknightd »

rupalb9 wrote: Sat Feb 08, 2020 9:47 pm
The doctor is recommending that she go into hospice care. The way he explained it, she will have access to all of the benefits of medicare care except hospitalization.
This is the part that scares me. What happens if, for example, your wife falls over and breaks her leg. Will you be stuck with a bill you can not pay? I'm not really sure how medicare works with hospice care.

This page helps a little is your have not already found it:
https://www.medicare.gov/coverage/hospice-care

One thing that stood out to me "Original Medicare will still pay for covered benefits for any health problems that aren’t part of your terminal illness and related conditions, but this is unusual. "
So I'm not sure if they would cover resetting a broken bone, if they determined your loved ones broken bone was related to their terminal illness. This uncertainty is troubling. And it comes at a time when you are both under stress. Not fair IMO
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Re: Wife's oncologist has stopped treatment, is recommending hospice

Post by JoeRetire »

rupalb9 wrote: Sat Feb 08, 2020 9:47 pm My wife has a history of metastatic breast cancer. Her treatments over the past two years have not stopped the progression of the disease. Her oncologist has stopped treatment because he feels that she is no longer able to handle the rigors of the regimens. She is going to be starting on (original) Medicare (Plan B) next month, a few months shy of her turning 65.

The doctor is recommending that she go into hospice care. The way he explained it, she will have access to all of the benefits of medicare care except hospitalization.

We are trying to figure out the nuances of all of this. I would appreciate any guidance from the forum members regarding palliative care and hospice care.
Sorry to hear about your wife.

We've used Hospice for both my parents, as well as my mother-in-law. They were terrific. They helped us keep our parents at home during the final months, as comfortable as possible. They passed as home, exactly as they had hoped. It was great for them, and good for the family as well.

Talk with the hospice folks. They will explain what they do, what they don't do, how much it will cost, etc, etc. They are a great organization performing a needed service well.
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Re: Wife's oncologist has stopped treatment, is recommending hospice

Post by Nowizard »

As others have said, I'm sorry to hear this news and offer condolences.
There is a difference in offering hospice and essentially dismissing a patient as it appears here. Many oncologists would shift from treatment to palliative care and any, in my opinion, would make specific recommendations about who to provide it if they did not. Also, though you did not mention it in enough detail to know, the paring of the recommendation for hospice with cost of additional treatment is questionable if the key to the recommendation. Hospice is for limited time conceptually, though doctors cannot always be accurate. There is an increasing history of much longer times in hospice with recommendations being as much financial as otherwise in some documented cases. Perhaps, a second opinion would be helpful. To be what is not intended to be overly direct, it is important to plan how to lead the last days of life as well and pain free as possible. The question of quantity versus quality of life enters the picture, and we are generally better at how to approach quantitative questions than one we all wish you were not also facing. Talk with hospice, but most of all your wife, then decide. A current friend is making a similar decision of whether to continue with treatment for the same disease.

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Re: Wife's oncologist has stopped treatment, is recommending hospice

Post by tibbitts »

smectym wrote: Sun Feb 09, 2020 3:58 am As an addendum: if hospice is the next step, please be sure that the culture of the facility, down to every caregiver in contact with your wife, is one of consistent respect for the patient. Unfortunately this cannot be just assumed. I was grieved to observe that my own father, a respected editor of medical textbooks and a Ph.D., was sometimes treated with casual and sometimes vulgar disrespect in his last days, by staff who had perhaps become callous and indifferent. You will have to be vigilant in any event, but making your expectations clear at the outset and establishing a relationship with a care coordinator who can address problems should they arise is also a big deal.
Hospice does not necessarily involve a "facility"; some people making use of hospice never leave home.
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Re: Wife's oncologist has stopped treatment, is recommending hospice

Post by LadyGeek »

I removed a number of posts suggesting alternative care - a few posts were related to medical advice and a few posts got into a contentious disagreement.
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Samueul
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Re: Wife's oncologist has stopped treatment, is recommending hospice

Post by Samueul »

First, sorry to hear about your situation, as someone who just went through this with my father, it’s really tough.

My father was diagnosed with Gliablastoma (brain cancer) in april of 19’. After all treatment failed, he entered into professional home hospice care in Dec 19’. Because it was home hospice, everything was fully covered by Medicare including hospital bed, LifeAlert, wheel chair, eating table, medical urinal, oxygen etc. We had a hospice team which consisted of a nurse, an aid, and a social worker who all visited the home every day.

We considered in patient hospice and found that all medical care would be taken care of just like in home hospice but room and board would not be covered and would be out of pocket. Our estimates for this level of care ranged from $4000-$6000 per month depending on the facility. We were fortunate enough to not need in patient care.

Dealing with professional hospice was one of the easiest medical experiences I’ve had, they did everything for us. Saying that, it was still grueling as in my father’s situation, he declined very quickly and needed a lot of care 24/7. He finally passed peacefully in January of this year.

Understand, Hospice is not always the end of life though it usually means all other avenues of treatment are no longer valid and patient comfort is now the priority. I had a good friend go into hospice for 3 months and his cancer went into remission and he came out of it and he is still living a full life today.
Last edited by Samueul on Sun Feb 09, 2020 10:04 am, edited 2 times in total.
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Re: Wife's oncologist has stopped treatment, is recommending hospice

Post by LadyGeek »

As someone who has very recently gone through this experience, let me offer a few suggestions:

First and foremost, the intent of hospice is to manage the patient's comfort - not to cure them. This is why they don't permit many of the things that one would normally do - such as seek treatment for a condition that's not related to the reason they were admitted to hospice. For example, a broken leg is not cancer.

That being said, if someone breaks a leg, the first thing to do is call the hospice service and coordinate with them for treatment. If one aspect of Medicare doesn't cover this (not qualified as hospice), then perhaps a different insurance will cover it. This is one of the questions you should ask the hospice team - How is this covered? Let them explain it to you.

Hospice is a service that can be done anywhere. It can be done at a nursing home, the patient's home, or a dedicated hospice facility. The hospice workers are specially trained to deal with this situation. That's not saying the existing staff doesn't know what they're doing, but that hospice provides a level of care beyond what the facility can provide.

My late husband was in a nursing home. Hospice provided additional equipment and extra visits that went beyond what the nursing home could provide. Additionally, hospice is a second set of eyes on the nursing home staff. If anything was going in the wrong direction, hospice straightened it out.

Next, hospice not only provides on-call nursing, but social services and chaplain support. One major benefit is free bereavement counseling for the family. In my case, counseling is provided at no cost for 13 months after the death of the patient. This service is invaluable to members in grief. Once hospice starts, you can call them at any time - before the patient passes. There's nothing like a trained bereavement counselor to help you get through this difficult time.

Please call the hospice service to have a face-to-face meeting. You'll get all of your questions answered. They know what you're going through and are trained to handle your situation in a sensitive and caring manner.
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LadyGeek
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Re: Wife's oncologist has stopped treatment, is recommending hospice

Post by LadyGeek »

Samueul wrote: Sun Feb 09, 2020 9:59 am ...Understand, Hospice is not always the end of life though it usually means all other avenues of treatment are no longer valid. I had a good friend go into hospice for 3 months and his cancer went into remission and he came out of it and he is still living a full life today.
Yes, that's what I was told. Hospice is defined when you have less than 6 months to live. It is quite possible that someone could live for more than 6 months. In that case, they could go on hospice on an intermittent basis.

OP - This is another question for the hospice service. What happens after 6 months?
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rupalb9
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Re: Wife's oncologist has stopped treatment, is recommending hospice

Post by rupalb9 »

From the OP

I should have mentioned that hospice care as suggested to us was going to be based in our home. The hospice agency would bring in any equipment like hospital bed, walker, commode, etc.
Care at home is appealing because my wife found her recent, and the only, hospitalization to be very hard to deal with. The kind doctors suspected an infection, treated her with serious antibiotics but were unable to find anything.

We will see about getting a second opinion for any further treatment if my wife regains her strength. At her current energy level, she would not be able to handle further treatment or qualify for a clinical trial.

My Plan of Action:
1. Today: Check out books on Palliative Care and Hospice Care from the local library.
2. Monday: Contact the 4 hospice care agencies whose names were provided to us by the oncology nurse.
3. Monday: Contact the social workers at the cancer center.
4. Get the POLST signed by the oncologist.

Thanks to everyone for their thoughtfulness, kindness, suggestions and good wishes.
Our two children, who are in their 30s, live nearby and visit often. They were with us this weekend and cheered their mother up.

In addition to everything, I have to strive to stay healthy.
Last edited by rupalb9 on Sun Feb 09, 2020 10:21 am, edited 1 time in total.
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Re: Wife's oncologist has stopped treatment, is recommending hospice

Post by Dottie57 »

My mom is in hospice. The biggest change is the amount of sleep. Hospice is in home right now and I am living with her. A nurse comes to check up every week. Medication is well managed. I have a phone number to call if I need help.. i can get help in home within an hour.
Peachyp
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Re: Wife's oncologist has stopped treatment, is recommending hospice

Post by Peachyp »

So sorry for you and your wife.

I just joined so I can offer support and a recommendation for hospice care. Saw both parents through hospice care in your immediate area. Our hospice provider was a godsend. Although my sister and I had been weekend caregivers for years, we had no medical training. Once they were part of the team we were greatly relieved. Services were comprehensive, punctual, and most importantly done with patience and kindness. Always wondered why anyone would want to work in hospice care. Now I get it- it is a calling. Our main goal was that my parents passed in their own home without pain as that was their wish and that was accomplished

Please pm me for a recommendation.
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Re: Wife's oncologist has stopped treatment, is recommending hospice

Post by Malingerer »

Hospice is a godsend. It’s a travesty as many people die as they do without using this service.

A couple things I learned:

Hospice does not necessarily mean treatment ends. As a prior poster stated, if the treatment is palliative it likely is covered.

Hospice allows down time To caregivers. It’s enormously stressful caring for someone Ill. Not only does the patient receive better treatment, but YOUR time with them is improved immeasurably as you get some “down time” as well as knowing a professional is handling the often many Medications needed.

I wish everyone knew that hospice improves the quality of life immeasurably for those terminally ill. They are a gift. Take the gift for yourself and your loved one.

Prayers for you both.
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Re: Wife's oncologist has stopped treatment, is recommending hospice

Post by vencat »

https://www.washingtonpost.com/wp-srv/s ... e-quality/

Basic idea of hospice is to keep patient and hopefully, family (indirectly) comfortable in an end of life, incurable situation. Generally, hospitalizations,IV treatments, expensive oral cancer meds, transfusions, ER visits, and testing is avoided.Of course, there may be some exceptions such as oral antibiotics for simple infections. Sometimes hospitalization may be required to relieve caretaker burnout (respite care). Some hospices have an inpatient unit (hospice house) for short term care including terminal care.
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Re: Wife's oncologist has stopped treatment, is recommending hospice

Post by quantAndHold »

LadyGeek wrote: Sun Feb 09, 2020 10:06 am
Samueul wrote: Sun Feb 09, 2020 9:59 am ...Understand, Hospice is not always the end of life though it usually means all other avenues of treatment are no longer valid. I had a good friend go into hospice for 3 months and his cancer went into remission and he came out of it and he is still living a full life today.
Yes, that's what I was told. Hospice is defined when you have less than 6 months to live. It is quite possible that someone could live for more than 6 months. In that case, they could go on hospice on an intermittent basis.

OP - This is another question for the hospice service. What happens after 6 months?
After six months, if the patient still has a 6 month or less diagnosis, then they get recertified and continue. Recertifications happen more often than every 6 months, but that’s the idea. DW had more than one patient who was on hospice for 2+ years. Medicare has since started cracking down paying for those situations, so I wouldn’t expect it to happen often.
Yes, I’m really that pedantic.
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Re: Wife's oncologist has stopped treatment, is recommending hospice

Post by marielake »

Both my parents were in hospice when they passed. My dad got services at home (RN, Aide, Social Worker). With him, doctors were reluctant to refer him to hospice even though we were told he had about a month left. In that month, he was in and out of hospital (kidney/lung cancer). He wanted to go home and we made it happen, despite MD advice. He was home for 5 days as comfortable as could be. Home health staff were excellent. Most of the family was there to help out, but it was exhausting. It was sad, but so much better than it would have been thanks to the hospice services.

My mom was in a hospice facility for 3 days. She got sick suddenly and passed within a week. She ended up requiring pain meds and was in the best place she could be for that. The nurses were angels.

They were both on Medicare and had good supplemental insurance. I never saw a bill for either of them.

Wishing you strength and peace.
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Re: Wife's oncologist has stopped treatment, is recommending hospice

Post by KESP »

rupalb9 wrote: Sun Feb 09, 2020 10:13 am From the OP

I should have mentioned that hospice care as suggested to us was going to be based in our home. The hospice agency would bring in any equipment like hospital bed, walker, commode, etc.
Care at home is appealing because my wife found her recent, and the only, hospitalization to be very hard to deal with. The kind doctors suspected an infection, treated her with serious antibiotics but were unable to find anything.

We will see about getting a second opinion for any further treatment if my wife regains her strength. At her current energy level, she would not be able to handle further treatment or qualify for a clinical trial.

My Plan of Action:
1. Today: Check out books on Palliative Care and Hospice Care from the local library.
2. Monday: Contact the 4 hospice care agencies whose names were provided to us by the oncology nurse.
3. Monday: Contact the social workers at the cancer center.
4. Get the POLST signed by the oncologist.

Thanks to everyone for their thoughtfulness, kindness, suggestions and good wishes.
Our two children, who are in their 30s, live nearby and visit often. They were with us this weekend and cheered their mother up.

In addition to everything, I have to strive to stay healthy.
Sorry you and your family are going through this. We went through this with my mother and it is difficult. She was in hospice and the nurse only came to her home twice a week and stayed for about an hour. Everything was paid for, meds, bed, commode, etc., so that was helpful. As another poster mentioned, if you can hire outside private help, I would consider that. It can be overwhelming and I hope you will allow people to help you. While it was difficult, I felt great satisfaction that both my parents were able to die in their own home. This is not always possible no matter what you do, but if the condition and circumstances permit, I would certainly try.
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Re: Wife's oncologist has stopped treatment, is recommending hospice

Post by LadyGeek »

As a reminder, this is an investing forum. Please try to stay focused on the personal finance aspects - Medicare and insurance.
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Re: Wife's oncologist has stopped treatment, is recommending hospice

Post by clip651 »

OP - I'm very sorry for the situation you and your wife are facing.

You have listed on your to do list to check out your local hospice organizations. If you can, try to get a feel from each group about what services they provide, and also how well staffed they are for their current patient load. Talk to other families that have used them recently if you can. Services can vary. I am not sure how much of this is regional, or how much of this is based on the individual organization's capabilities or philosophy, or other issues.

I mention the staffing levels and patient load issue because of personal experience. When one of my parents was in hospice at home not long ago, the group was helpful but clearly a bit overwhelmed by their patient load compared to their staffing level. For example, the 13 months of grief counseling which they advertised, medicare paid for, and they were supposed to provide, ended up consisting of an initial meeting while the parent was alive (which occurred during the initial meeting with the nurse and other staff), another meeting on the day of passing, and one more many months later. The rest of the time if we were looking for grief help we were playing phone and text tag with the counselor who kept promising to get back to us "next week" to set up a time to talk to or see the family. She was too overwhelmed to even be able to commit to a time in the near future most times we reached her. We gave up when the 13 months ended, despite having been playing unsuccessful text/phone tag for two months prior to that.

On another note, if hospice says your wife qualifies for medical equipment, such as a hospital bed, commode, etc, if possible I recommend letting them bring you those things earlier than later. It can be a bit of a commotion to have those things delivered, and it can take a day or two or more to get them, especially if ordered before a weekend or holiday. It's best to have them in place early, rather than be trying to juggle delivery while managing care without the needed equipment. Patient needs can sometimes change rapidly, and since these items are likely to be covered, it's simplest to have them in place and ready to go when needed.

I hope you find a wonderful group to work with that are very helpful to you and your wife.

Depending on your wife's needs, you may also want to consider additional in home help (home health aids or nurses, etc) beyond what hospice will provide. Depending on the needs of the patient, care-giving 24/7 can become exhausting for the family, and some tasks also are much easier with a second set of hands. So you might ask the oncologist, and/or the hospice groups you speak with who they recommend for home health providers in your area. This is an additional expense that may need to be budgeted for, but it can be well worth it.

Along the same lines, if you find you and your children are having trouble keeping up with other day to day chores, you might consider paying for other services such as housekeeping, lawn/yard care, grocery delivery, etc. This will depend on your personal situation and budget, or course.

best wishes,
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Re: Wife's oncologist has stopped treatment, is recommending hospice

Post by twh »

To the OP...

As others have pointed out, when you go into hospice, whether is it in-home or in a facility, you agree to not seek treatment for a cure or life extending measures. So, you and your wife have to decide if you have accepted that this is the end of trying to get better or live longer. Hospice is only about making things as comfortable as possible until death. This is only a decision your wife and you can make.

But, you may also be in a critical time window for insurance that requires your attention. The month your wife turns 65, she is eligible for Medicare. That itself can mean various things. Not signing up on time can be disastrous financially. Typically someone will do one of two things: (1) sign up for Part A, Part B, Part D and get a Medigap Policy, or (2) sign up for Part C Medicare Advantage Policy which will typically include the same coverage as in (1).

When you are first eligible for Medicare, the private companies supplying the Medigap policies or the Medicare Advantage policies cannot subject you to underwriting. Medicare calls this period "Guaranteed Issue". That means those companies cannot deny you coverage even though she has cancer now. If you do not sign up within the initial period, they can deny you coverage and/or charge you a higher rate.

So, my advice is, even if your wife's outlook isn't good, you never know and I would proceed to sign up for Medicare using (1) or (2) above.
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Re: Wife's oncologist has stopped treatment, is recommending hospice

Post by finite_difference »

neurosphere wrote: Sat Feb 08, 2020 10:20 pm Not medical advice, but just yet another point of view, maybe?

There are certainly situations where hospice is not "giving up hope" but rather admitting that the end will be happening sooner than one wishes. Hospice can be an empowered decision about how to live out remaining time. There are studies which show that with certain cancers, those who choose hospice live a longer life (and subjectively a better life) than those who choose otherwise.

Sending virtual hugs your way.
I think also Doctors themselves may prefer hospice or not treating themselves depending on the condition, because they know first-hand the treatments can be so tough and can do more harm than good. I’d want to fight, but want my last weeks to be at home rather than in a hospital.

I have gone through metastatic breast cancer and hospice recently with my mom. My thoughts are with you.
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Re: Wife's oncologist has stopped treatment, is recommending hospice

Post by ncbill »

Given the difficulties with Medicare Advantage plans & Hospice on another thread here I also recommend you have her sign up for a traditional supplement plan (e.g. Plan G & drug plan) instead of any type of Medicare Advantage plan.

I did the above with a relative who was on Hospice for several months before they passed away a year ago.

Be prepared for the possibility that you might not be able to meet all her needs at home...my relative initially went to a nursing home but hated the shared room on the custodial side (VERY different from the private Medicare rehab room she had been in earlier at the same facility) so I then moved her to a private room in an ALF very close to me.
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Re: Wife's oncologist has stopped treatment, is recommending hospice

Post by LadyGeek »

From a financial perspective -

A major objective of your retirement funds is to spend it on daily living and having a good lifestyle. Unplanned events can change that.

If you have sufficient funds, your retirement savings can be allocated for assisted living. Instead of paying for Long Term Care insurance, you allocate a good chunk of your retirement savings to "self-insure". IOW, your savings now pay for long term care.

That's what happened to me. I was spending down my husband's IRA to pay for the nursing home. At that time, he also qualified for hospice, which was covered by insurance. So, private pay at $408 / day, the rest covered by hospice.

Why am I mentioning this? Because you should use those retirement funds to cover medical expenses. Medical expenses are qualified deductions on your tax return. Taking distributions from an IRA for this purpose can be deducted from your income (over the 10% AGI limit).

Your wife is 64 years old and can take IRA distributions without penalty (the penalty stops after age 59 1/2).

:!: Important: Do you have all the legal documents in place? It is very, very important to have both a medical POA (Power of Attorney) and stand-by POA ready to go now. You will need one to take care of medical admissions (medical POA) and one to take care of financial transactions (standby POA).

If your wife has a traditional or Roth IRA, I strongly recommend getting a POA for her investments so you can manage them when she is unable to do so. Also, get POA for her bank accounts. I recommend putting her accounts into both your names (joint ownership). That's what I did, it was a very good move in hindsight. I took care of all this a few weeks before my husband degraded to the point where he was no longer able to manage his finances. So, do it now.

This will remove the burden from her to worry about the paperwork, especially as the disease progresses.
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Re: Wife's oncologist has stopped treatment, is recommending hospice

Post by JoeRetire »

rupalb9 wrote: Sun Feb 09, 2020 10:13 am I should have mentioned that hospice care as suggested to us was going to be based in our home. The hospice agency would bring in any equipment like hospital bed, walker, commode, etc.

Care at home is appealing because my wife found her recent, and the only, hospitalization to be very hard to deal with. The kind doctors suspected an infection, treated her with serious antibiotics but were unable to find anything.

We will see about getting a second opinion for any further treatment if my wife regains her strength. At her current energy level, she would not be able to handle further treatment or qualify for a clinical trial.
What does your wife want?

My dad passed last October. He lived a good life and was ready to go, he just wanted to pass at home. Hospice was extremely helpful making that happen with dignity and without any pain. They were also very helpful with the family - made sure we knew what to expect, how we should help, how to get what dad needed, etc, etc. They handled all medications needed for comfort and pain relief and ordered all equipment as needed. They called the doctor and funeral home when my dad passed. And they offered grief counseling for family members who needed it.

They are truly a great organization. And if your wife is ready, I'm sure you both will be happy with their services.

If you choose to engage their services, they will come out to visit with you. During that initial visit, they will gather your insurance information and tell you exactly what will be paid for and what will not.

If you have a financial adviser, you should inform them what is happening, if you haven't already done so. And if your wife has an estate attorney, you should be talking with them now, to get them ready as well. Hopefully, your wife's legal documents and finances are all in order - will, insurance, etc. If not, make sure they are all up to date (check the beneficiaries!).
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