Catholic Exchange

The Confusing Hospice Decision, Part One: Understanding Kinds of Care

Written by

Barbara A. Olevitch, Ph.D.

in

Hospice or not?  What an agonizing decision!  In order to choose hospice, a patient has to be willing to renounce all "curative" medical care for his terminal illness.

What does this mean exactly?  Understandably, many people find it rather confusing.  When a person is terminally ill, what sort of "curative" care could there be for him to renounce?

What Ever Happened to Sustaining Medical Care?

We nowadays speak very often about the choice between "curative" and "palliative" care, as if all medical care fell into one of these two categories.  Actually, there is a third very critically important category — "sustaining" medical care. 

I will give definitions of these three kinds of medical care and some examples for each.

Curative care is when your disease is conquered.  Not only do your visible symptoms go away, but you no longer have an underlying medical condition that will produce more trouble for you in the future.  For example, a cancer patient has surgery that completely removes his tumor and it never comes back.

Palliative care attends to only the symptoms but not the underlying medical condition; for example, the patient is given pain medications.  His tumor is still there and still growing and still threatening his life, but he no longer is in pain.

Sustaining care is when the underlying medical problem still exists, but with monitoring and treatment, the threat to the integrity of your body is being controlled.

Here are examples of "sustaining" medical care:

A patient with lung disease is having trouble breathing.  He is brought to the hospital, where the excess mucus is removed from his lungs.  Now he can breathe again.

A patient has a stroke which affects his ability to swallow.  He is given a feeding tube to sustain his life.  He can now participate in rehabilitation.

Sustaining medical care is very successful in prolonging life and the quality of life.  Neither of these "sustaining" medical interventions were "curative."  Both patients still have their diseases, but now they are breathing and are able to be nourished.

If these patients elected to have only "palliative" care in hospice and had developed these same symptoms, they might not have been taken to the hospital.  They might have, instead, been sedated to keep them from experiencing discomfort.  This collapse might well have been their final collapse.

The Fearful Decision

In recent decades, physicians have been schooled in the idea that patients have a right to know when their condition is such that they can no longer expect to be cured of their diseases.  They have also been taught that the patient has the right to decide when he wishes to stop treatment, for whatever reason.

So when a physician tells a patient that he may be eligible for hospice, it may mean that he cannot be cured, but it does not necessarily mean that the physician thinks that the patient cannot be sustained!  The physician may simply be informing the patient that his disease is something that isn't going to disappear and that, if he doesn't engage in sustaining treatment, he would be dying, so he is eligible for the Medicare hospice benefit.  He can drop out of sustaining treatment and use the Medicare hospice benefit if he wishes.  This is like telling a high school student that he has reached the age where he is legally able to drop out of school.  It doesn't mean that it is a good idea!

There is a lot of room here for misunderstanding.  The doctor may think, because the patient appears discouraged, that he would not be interested in sustaining care.  The patient may think, because the doctor mentioned hospice, that sustaining care is not possible.

Another confusing matter is that, even if the patient understands the concept of sustaining care, it is still hard for him to know whether, if he chooses hospice, there will be any sustaining care given along with his palliative care or not! 

Although, in the hospice of yesteryear, sustaining the patient was part of the protocol, today, this may not be the case.  In some hospices, "sustaining" care is considered "curative" — and therefore not included — because it is "life-prolonging."  In some hospices, the exclusive focus upon "palliative" care can be very extreme.

So, on the one hand, the patient hears that, if he goes to hospice, he will be able to stay at home, and experts will manage his pain and symptoms.  But, on the other hand, he fears that when he gives up "curative" care, he may be giving up something important and he may die sooner in hospice.

Who Can Help a Prospective Hospice Patient Find Out the Truth?

A patient who is deciding whether to enter hospice and who wishes to understand his own risk has to sit down with his trusted, curative physician, hopefully one who shares his religious values, and make a list of all of the curative and sustaining treatments that he is using now and all of those that he is likely to need in the future and ask this doctor to explain to him what will happen to him if he gives up each one of them.

Comments

  1. Guest Avatar
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    I read this fine essay and had bad vibes….like Nazi Germany where people were told to go to right or to the left at the direction of the guard.    

     

    I know people going to talented (not doctors) learned people, who know Chinese herbs or bio-kinesiologists, or naturaths (sp) who help them live and who are not so dedicated to the drug industry.  People get what their bodies need to live without the drug-induced trances that appear to be 'the solution'.   I am getting this man's book from my local library.

    A few good books I am also reading: The China Study by T. Colin Campbell, PhD and Thomas M. Campbell II.   The Extra-Ordinary Healing Powers of Ordinary Things by Larry Dossey, M.D.     Thanks to whomever in CE is choosing these timely articles.   And thanks to God for His Son.     In Christ,  Patricia

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    Very helpful Dr O – thanx for sharing your wisdom – AndyP/Doria2 – Yonkers,  NY

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    The article by Dr. Olevitch requires some clarification. First, Dr. O fails to mention that the purpose of conventional Medicare is to pay for curative care. That is, healthcare professionals must justify the treatment under conventional Medicare by showing that the care has a curative purpose. Before the Medicare hospice benefit was implemented, many patients received unnecessary, and often uncomfortable, curative treatments for their terminal disease because that was the only way to justify their care. Fortunately, the hospice benefit provided a way for patients to say, "enough is enough", and receive treatment of their pain and other symptoms paid by Medicare.

    Second, Dr. O's article does not make it clear that Medicare regulations do not mention "sustaining" care. Patients must elect the Medicare hospice benefit to receive palliative care, or they are treated under conventional Medicare with the requirement for care to be curative. "Sustaining care" may be a concept of care, but it is not addressed in the Medicare regulations.

    Third, Dr. O does not mention that hospice admission requires a referral from the patient's physician, and that hospices are required to inform patients of the care they can and can't provide under the Medicare hospice benefit before a patient is admitted. Under Medicare, a patient may revoke hospice care at any time and return to the conventional Medicare benefit if they wish to seek care not covered by hospice, so there is no patient risk in electing the hospice benefit.

    And, finally, Dr. O does not mention the services provided by the Medicare hospice benefit that are not covered by the conventional Medicare benefit. Hospices are required to provide the services of social workers, chaplains, and counselors that can help a family deal with the issues associated with the loss of a loved one, while such services are not offered under conventional Medicare.

    Since over 70% of hospice patients are covered by the Medicare benefit, it a significant factor in the care of terminal illness in the U.S. Satisfaction surveys of patients and families cared for under the Medicare hospice benefit are over 95% favorable, higher than comparable surveys for curative care. Any Medicare patient faced with a terminal illness needs to understand the hospice benefit in order to make intelligent decisions regarding healthcare.

    Disclaimer: I am not now associated with any hospice or affiliated organization. I have worked as a hospice volunteer in various capacities for over 20 years.

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    Very good article.  Timely too for us, we just placed my father-in-law on hospice.  The doctor said he could no longer "make him better" and agreed that hospice care was best.  He said they would still treat him for anything else that wasn't the terminal disease. ie.. if he gets pneumonia they will still give him antibotics.  Also, if a symptom of his terminal disease makes him uncomfortable then they will treat it, like giving him lasix to rid of edema. 

     

    We are certainly hopeful that hospice is the necessary care that he needs at this point, and we need too.  It certainly is scary to see how hospice care can be interpreted, almost as facilitating death.  I'm sticking with the church's teaching on this one.  I think the church is the most compassionate with end of life issues and really understanding when death is actually happening verses the person being in the dying process, which can take months. 

     

    Best advice – know the church's teachings on this (it's spelled out in the caticism), and know your phycisian's view on end of life.

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    I also want to respond to this article by Dr. Olevitch which is very misleading. I note that Dr. Olevitch is not a physician and may not be familar with the details of carrying for the critically ill or those with terminal illnesses. I am a pulmonary critical care physician, am a totally prolife, practing Roman Catholic and have assisted the prolife community in my diocese. In addition I am the director of the medical ICU at a large teritary care community hospital so I have a good deal of day to day experience dealing with end of life issues.

    To correct the distortions in the article:  1) Hospice is a typically an option for those who have a progressive terminal illness and who are expected to survive for less than 1 year. The focus in hospice is on relief of symptoms, and not on further life prolonging care. It is simply incorrect to state that one must decline all "sustaining" care. Patients routinely can continue to recieve non burdensome , "sustaining care", that treats illnesses which can be easily treated, and that offer some meaningful benefit. For example if a patient with end stage emphysema was to develop pneumonia they can certainly recieve antibiotics, fluids, and even be admitted to the hospital. What patients in hospice accept is the concept that they are at a point in the disease in which the underlying dying process can not be reversed or halted. ( For example the same patient with emphysema will within several months, or perhaps sooner, have an inexorable decline in lung function often puntuated with multiple infections, causing them to succumb even if all the infections are treated.) Even in this case what types of treatment for each episode constitutes "sustaining care" ( an ambiguous term coined by Dr. Olevitch) or becomes merely prolonging the dying process in the setting of inevitable decline is not always obvious. The example Dr. Olevitch gives of "clearing the mucous from the lungs" is itself perplexing as this might mean nasal- tracheal suctioning which can be done at home by the hospice nurse or even a trained family member, to bronchoscopy, an more involved procedure that is potentially uncomfortable, is done with a special instument called a bronchoscope, and requires a physician. It caries its own set of potential problems. It should be obvious that the distinctions are morally meaningful, and Dr. Olevitch's careless lumping these sorts of things together with the vague "clear mucous" from the lungs is not helpful.

    It is true that patients in hospice typically elect to avoid things which may only drag out the dying process, such as mechanical ventilation, etc.. But doing this is certainly within the acceptable Catholic tradition of avoiding extrordinary treatment. In fact we have the example of Pope John Paul II, who evidently died in the Vatican without transport to a hospital, and in all probablity without attempting to employ measures that could have lengthened the dying process further. In fact to carry out the John Paull II analogy a bit further, while we must be a bit cautious since the details surrounding his last moments are not fully accessible, we know that the Pope died from "urosepsis" ( that is a serious urinary tract infection), in the setting of advanced Parkinsons's disease. Based on what has been published in news accounts it appears that this final illness could have potentially been reversed, with not just antibiotics, but agressive life support including mechanical ventilation, IV drugs to support blood pressure, and carefully titrated fluid support. This type care would probaly have prevented the Pope's death from that particular episode, however would have left him vulnerable, given his overall debillitation to subsequent identical or similar episodes. This is true since patients with advanced degenerative neurologic diseases, like Parkinson's disease typically die from secondary infections. So it would appear that John Paul II, declined aggressive life support because this type support would have resulted in a non meaningful extension of life. ( Non meaningful as meaning the extension would have not increased his life by a large amount of time.) This is, of course, well within the bounds of what the Church has described as extrordinary means.

    Given John Paul II's  saintly Christian witness during life, his actions carry a particular weight as an example of a reasonable moral course to those who may be struggling with these kinds of issues. I concede that some individuals in hospice will in our time decline kinds of treatment we would see as "ordinary", and thus morally obligatory. This is typically in the setting of fixed non progressive neurologic disease. Often this involves food and hydration, or antibiotics. In most cases this is in fact wrong, and I would agree we should oppose this, but I would not focus on these to the distortion of the hospice option in general. ( Even here judgements are not always obvious as there may be cases in which food and water are also extraordinary. For example a patient with very advanced metastatic cancer, who is expected to die within days and has intractable vomiting. In that case tube feeds may produce nausea, and artificial hydration may not extend survival beyond a day or two, thus does not offer meaningful benefit.)

    In many cases hospice avoids employing treatment that is costly, of limited benefit and burdensome. This is the very defintion of "extraordinary care" and it is certainly within the tradition of Catholic moral theology to use. The answer to our societies "culture of death" approach to end of life issues is not to equate the decision of a dying patient to not employ every last method to prolong life with Euthansia. We need to be mindful and careful to make appropriate distinctions in this difficult area.

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    Dear "mdepie": Thank you sincerely for your clarification of this article.  I have a 2-yr degree in Med. Arts & Sciences, have some (limited)experience with hospice, and couldn't make head-nor-tails out of the article.  And, thank you especially for pointing out that Dr. Olevitch's degree is not in medicine.

    As a "senior" with emphysema, I've been trying to educate my family on the issues on which they will have to make decisions.  Since I'm the only practicing Catholic (at this time), I'm fighting an uphill battle with them about what's "allowed" and what isn't, what I want and what I don't, etc.  Your perspective will make my job easier.  Thank you.

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    Just one last word to patients like Cooky642. I used emphysema in my example of a potential disease which at some point in the course may have reached a point that hospice is a reasonable option. While certainly this is true in some cases, not every patient is so far advanced in their disease that artificial life support is always futile. For example there are many patients who have chronic lung disease ( or other chronic medical problems) which while progressive are still early enough in their course that all forms of life support may offer real benefits. Again to use emphysema as an example, there are patients who have moderately advanced disease, who come down with pneumonia, may develop life threatening respiratory failure, but with temporary life support including mechanical ventilation recover and live several more years. In contrast another patient farther along in the disease may derive much less benefit from even temporary artificial life support. It needs to be understood that these decisions are often very difficult, and the solutions not obvious. They are best made after careful lengthy discussion with ones physician in consideration of ones individual circumstances. I would suggest that it is necessary to try and understand the moral tradition of the Church in this matter. This can be done through personal study, or discussion with a sympathetic, and orothodox Catholic doctor ( there may be one in one's Parish. At times one may be fortunate to be in touch with a Priest who is familar with the Church's stance on these issues,  and to find a primary physician who respects it. Of course one should discuss one's wishes with family members as well. 

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    God loves you .

    This Part One – more to come, it seems.

    I would like to read Dr. Olevitch’s response to techwreck and mdepie. And, I have enough time around to know that the Ph.D.-doctor need not be M.D.-doctor to be aware of the circumstantial facts of things, if she has worked with what she is writing about. My late wife’s life-long-chronic Type-1 diabetes taught me a great deal about diabetes with no more ‘doctor’ to me than beloved interest.

    I think that she isn’t quite clear that sustaining procedures aren’t quite delineated for procedural itemizing as such. She needs to address that fact for what it means to the curative-care patient vs. the hospice-care (mainly palliative) patient.

    I am already issuing orders through my medical help and my daughter for what I will put up with if I can no longer tell them. I carry an id. card that assures any emergency-care physician that he has full license to fight for my life. Even what may ‘hurt’ me might help the next such patient.

    And, my immediate support group – paid by ME even if Medicare handles the transactions – know I’ll haunt their bloody bedrooms for the rest of their lives if they fail my orders. And, they know that they don’t want some ornery Purgatory case glowing in the dark of their bedrooms.

    Remember, I love you, too .

    Toward our holy and prosperous New Year in Christ,

    Pristinus Sapienter

    (wljewell @catholicexchange.com or … yahoo.com)

  9. Guest Avatar
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    Thank you, again, mdepie, for your further clarification.  Yes, I'm quite aware that there are mitigating circumstances: it just kind of "hit me where I live" that you picked emphysema as your example.  Always, always, what the Church teaches comes first (that's the part I'm having trouble with my family about).

    Dearest P.S.: you're a brave soul, and I admire you for it.  And, thanks for the tip on encouraging compliance with your wishes: I'll try that, and let you know how it works. 

  10. Guest Avatar
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    God loves you .

    In health, where ‘practice’ still prevails over ‘science’, it is good to be rationally brave for the poor hearts of all who would not see you suffer any longer. (“I’m not yer freakin’ poodle! Get busy!”)

    Where there’s life there’s not only hope but more ‘practice’ – and maybe a touch of ‘science’.

    Folks – they only get to do one post-mortem. There’s a lot of pre-mortem(s) – some of us are bold enough to call it ‘life‘ – in all of us.

    Of course, I’ll never argue over the good dears trying to be as ‘palliative’ as possible while doing ‘curative’ – and even ‘researching’.

    Remember, I love you, too .

    Toward our holy and prosperous New Year in Christ,

    Pristinus Sapienter

    (wljewell @catholicexchange.com or … yahoo.com)

  11. Guest Avatar
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    Dear mdpie:  I think we are leading parallel lives as I appear to have the same job description as you, although in a largely Godless academic medical institution.  I too direct the ICU and am a pulmonary/critical care physician, totally prolife practicing Roman Catholic.  I completely agree with your comments and your assessment of Dr. Olevitch's article, and particularly with your comments about the death of our late Holy Father.  Although I realize there has been some controversy about his death, it did help me make sense about what I was trying to do in dealing with patients in advanced stages of disease at their end of lives.  As physicians, I'm not sure that the public is aware just how difficult, mentally and emotionally, it is to sort through decisions and have discussions with families on a daily basis.  It is often agonizing for me, and for the junior doctors that I train.  It is particularly difficult when you are trying to convince a family to "keep going" when they want to throw in the towel.  I've actually had families ask me to give the patient something "to just knock them out and put them out of their misery".  It has been my hope to have more empathy and support as a physician from the Catholic community, but I do not think that this has often been the case.  Instead, the unspoken overtone of what is written in this area (death and dying, hospice, euthanasia) on CE and elsewhere tends to vilify all physicians.  I would like readers to know that not all physicians work for the enemy, and hope that you will pray for me physicians who work in this area of medicine.  There are many, Catholic and non-Catholic alike, who favor life. We could use the help!

  12. Guest Avatar
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    Ellen, 

    you have my prayers.

    Madeline 

  13. Guest Avatar
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    God loves you .

    Dr. Olevitch – need some further input here about the thoughts of these experienced medicoes who have concerns with your thoughts . . .

    Good doctors, nurses, aides, volunteers – all, pro-life front-line fighters – You are in my prayers and thoughts – know every struggle you make, win or lose, adds to your place with God at your end.

    Remember, I love you, too .

    Toward our holy and prosperous New Year in Christ,

    Pristinus Sapienter

    (wljewell @catholicexchange.com or … yahoo.com)

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