hospice

Parent Cafe
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<p>Did anyone encourage your relatives to seek out second opinions?</p>

<p>The reason I ask, is because, we’ve had patients sign onto hospice whose physicians do not want to give up treatment, but the patient does. So the patient finds a physician that will honor their request. If anything, I’d say this is what I’m more likely to see as hospice staff… physicians that aren’t willing to give up. </p>

<p>Every hospice agency has a medical director that is used for consulation on what options a patient has. If a family/patient truly believes hospice is what they want and the physician refuses, then they can consult with our medical director (no charge); some, after doing so, choose our medical director as their primary physician if they decide hospice is what they want and they don’t want to do any more shopping around. No matter who the physician is though, a hospice agency will not admit a patient that does not fit the medicare criteria. Medicare criteria usually sets the standard for private insurance companies as well. So while your relatives were admitted kicking and screaming, somewhere, a physician believed they met the medicare standard for hospice care and signed the orders. </p>

<p>Medicare standards are very clear. We have turned down patients who did not meet medicare standards despite their family members wanting them to be on hospice (usually in cases where family members know the presence of hospice will provide enormous support for them). It is also not uncommon for our agency to discharge patients from hospice if they do not continue to meet medicare standards; usually this is determined by ability to function and/or weight loss. I can’t count how many times we’ve signed someone onto hospice, gotten into the patient’s home (wherever that is… nursing home, assisted living, etc.), made recommendations for medications and medical equipment that makes everyone’s life easier and more comfortable, and with those changes in place, the patient stabilizes, and can even improve. Usually home health care steps in when we discharge them, if they are living in a residential home. </p>

<p>When chaplains enter the picture, we operate on the assumption that the patient has qualified for hospice care (meaning has been given a terminal diagnosis), and will most likely die within six months without aggressive treatment. Yes, a good death experience is our goal (as opposed to a bad death experience) if death is expected within that time frame, so there is education to be done. However, much of our care focuses on living. You might be surpised to know many agencies (including our own) have on staff for patients and their families a massage therapist, art therapist, music therapist, and pet therapist. We also have incredible volunteers that spend time with patients for socialization and respite relief for caregivers. Heck, we even ordered viagra for one of our middle-age patients when an old love entered his life (he had terminal liver disease due to drug and alcohol abuse). That’s about living!</p>

<p>However, in too many instances, people wait too long to sign up for hospice, and we are not able to make these services available to them (except massage therapy, who we often offer to caregivers, too, and music therapists, who will visit no matter the patient’s state of alertness).</p>

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<p>I’m pretty sure the doctors were correct in the case of my relatives…they both died within a month of starting hospice care. Some people would say they were in denial and some people would say they were fighters…</p>

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<p>Very busy couple of days but now able to check back in-</p>

<p>yes teriwtt, I have been in hospice now for 5 years and the changes that I have seen are mostly regulatory for ex the criteria for admission into a hospice unit have been tightened.</p>

<p>I agree with your latest post in that some people come into hospice, stabilize and are discharged. They can be readmitted when their condition warrants it and they desire hospice. I have posted the criteria for hospice admission for dementia below for those who are experiencing the sadness of life with an alzheimer’s patient. Alzheimer’s is one type of dementia.</p>

<p>Many people do come into hospice and die quickly and I can understand why one might question if hospice killed the loved one with morphine. Morphine is the gold standard for opioid pain relief and we start an opioid naive patient on very low doses and titrate as necessary for pain and shortness of breath symptoms. We don’t give enough morphine to a patient to kill them.</p>

<p>"Hospice’s admission guidelines for persons with dementia of either Alzheimer’s or multi-infarct type (irreversible) are as follows:
Person has to be in the end-stages of the disease, (stage 7 or beyond).
Person cannot walk, dress, or bathe properly without assistance.
Person is incontinent.
Person has little or no meaningful verbal communication.
Presence of medical complications that require hospitalization. Must have had one of the following in the past 12-months: aspiration pneumonia, kidney infection, septicemia, multiple ulcers, and recurrent fevers after antibiotics.
Deteriorating nutritional status as evidenced by difficulty swallowing or refusal to eat and progressive weight loss, etc.
The person exhibits severe cognitive impairment as evidenced by progressive confusion, anger, frustration or withdrawal, inability to recognize family or friends, loss of ability to follow directions, loss of immediate and recent memory with progressive loss of remote memory.
The patient/family desires no further medical intervention and/or aggressive medical intervention is considered futile.
There are other existing medical problems accelerating terminal disease such as CHD, COPD, Renal disease, Liver disease, etc.
Guidelines 1 and either 2 or 3 must be present and clinical judgment must always be considered!</p>

<p>Also, if a person with dementia admitted to Hospice care shows significant improvement to the point the person is discharged from Hospice, the person can be referred again for Hospice care and be admitted regardless of a previous admission."</p>

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<p>busyparent, </p>

<p>Thanks for the info. about alzhiemer’s and hospice. Mom’s straddling stages 6 and 7. Some days more 7 and some days more 6. It’s such a frustratingly horrendous disease. Sigh …</p>

<p>zebes, who’s now redirecting Mom to keep her agitation at bay … must be after 3pm. Yep, it is.</p>

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<p>zebes - I can’t even begin to express my sorrow at this transition in your life. I get exhausted just reading your post. One of the main goals of hospice is to make sure family members are taking care of themselves, because if family members are not taking care of themselves, then we know the patient suffers indirectly. I know of a handful of situations where hospice has pulled out of a family because the caregiver wasn’t being compliant with their own self-care, meaning they were overstretched, overtaxed, and didn’t accept/hire any outside support. It becomes a safety issue. Even when you place your mom in the facility, it will still be taxing, but you will both be more safe. I know of very few family members (maybe none) who have been able to care for loved ones with dementia alone, without some kind of intervention.</p>

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<p>Teriwitt, my mother had a DNR for at least five years before she entered the hospice program. She just hated the idea of giving control to anyone but herself. She absolutely doctor-shopped; she left one doctor who suggested valium to ease her breathing–which it did, since it relaxed her chest muscles. However, she quit taking it because it made her “feel too nice.”</p>

<p>Busy parent, my mother was in fact given morphine for the pain of her emphysema and failing lungs. Since she was having difficulty breathing in any case, it’s hard to know whether the morphine hastened her death, but none of us children were involved in any way; she personally consented to everything that was done.</p>

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<p>dmd77 - just had that experience with a parent with emphysema as well, after all the years of dreading the moment of watching a loved one literally “drown”, with the help of home hospice the morphine made it so peaceful. In our case we were administering every two hours as ordered toward the end, but I don’t think it was a case of hastening things at all.</p>

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<p>while I hope busyparent can back me up on this (since I’m not the medical expert on this), morphine has a bad rep, mostly because of it’s addictive nature (not an issue with people on hospice). </p>

<p>One of the chaplains I know in hospice is also an RN (only works as a chaplain, though). For many years prior to returning to seminary, she worked in hospitals and became familiar with the dosages of morphine often prescribed for various conditions. When she started working for hospice, and was exposed to the dosages that can be prescribed under hospice care, she was astounded. Based on how she’d been educated and the experience she had in a hospital setting, she couldn’t believe the doses that people were being given in hospice, and how they weren’t comatose as she’d been led to believe they would be by hospital medical staff. As busyparent says, our staff always begins with a low dose, then titrates it as needed. But much higher amounts are actually tolerated fairly well by most people. One of the education pieces our staff often has to do with family and hospital staff is the appropriate usage of morphine, and not to be afraid of it.</p>

<p>I hesitate to venture out into the medical aspect too much, but having seen people in their last hours and minutes without the appropriate dosages of morphine, I suspect those without it, might actually die more quickly. My reason being, toward the end of a terminal illness, the body is working incredibly hard; it is exhausting, which is why people sleep so much the last few days. Morphine gives the body a rest from the pain, and helps alleviate the restlessness that is present without it. We can tell when people who are otherwise uncommunicative are in pain or aren’t getting adequate pain relief. It’s difficult for family and caregivers to watch. So, I wonder how much added work it puts on the heart and lungs to cope with pain and restlessness. If you utilize the morphine appropriately, can the relief it brings allow your heart and lungs to be not so stressed, therefore not giving out quite so quickly? Again, I’m not a medical expert, but I’ve wondered about this as a possible side effect from the morphine. </p>

<p>When my own mom died, in the hospital, under hospice care, she had suffered from congestive heart failure (CHF) for many, many years. She’d been in and out of the hospital many times over several years. This last time, she developed peritonitis, but her heart was so weak she wouldn’t last through the surgery. I kept wondering, if her heart was so weak, how did she manage to live for two days with the morphine doses she was getting? It was very enlightening for me to see this with my own family member.</p>

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<p>On the question of whether hospice somehow encourages a patient to throw in the towel, hasten death, or rush ahead of their patient to the cemetery, I am remembering a passage from Talmud. </p>

<p>According to that system, based in compassion and practicality, one may not do anything to hasten death, but one may remove an impediment to death.</p>

<p>The example given is if a dying person is in bed with an open window, and an outside sound of a woodchopper appears to agitate him in his sleep (they mean coma; this was 6th century, after all), then the family may close the window, and if still more peace is needed, ask the woodchopper to stop working. </p>

<p>The implication is that the person may be trying to pass on, and we’re not supposed to have things going on that keep him here. What you can’t do is go out and ask someone to start chopping wood under the person’s window to agitate him, which would be to hasten a death.</p>

<p>In modern medicine, I’d think there is a similar difference between “hastening death” and “removing impediments.” There’s a world of difference, and it sounds to me as though Hospice is about removing impediments, which is not the same as hastening death.</p>

<p>Curious from those who actually do this work if that idea is still relevant?</p>

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<p>I realize that this is a hospice thread and that this topic may deserve a thread of its own as our generation is quickly becoming the oldest generation, but…alzheimers disiease has been mentioned. I was just curious about those poster’s parents who were so intelligent and vital and developed the disease. I know that there are genetic components, etc, etc. However, current research implies that onset may be delayed by not merely keeping active and doing the crossword puzzle (even the challenging one), but by learning new things:</p>

<p>“Along the way, neurologists have discovered that the brain is much more adaptable as it ages than they realized. They have determined that the so-called plasticity of the brain, which allows the formation of new neurons as well as new connections between those neurons, can last a lifetime. “As far as our brains are concerned, learning something new or even retrieving something from memory is a plasticity response,” says Molly Wagster of the National Institute on Aging. It may get harder as you age, but if you can teach an old brain new tricks, you might, just might, also be able to keep it functioning well into the 90s.”</p>

<p>Any comments from your experiences?</p>

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<p>My dad was absolutely a lifelong learner. He struggled mightily against this but, in the end, could do nothing. Maybe the full impact was delayed and he was able to live independantly longer than he would have, but he also did not seek treatment until forced to do so by the sudden exacerbation of his symptoms due to some outpatient surgery and anasthesia. </p>

<p>As a retired clinical psychologist who lost his own mother to Alzheimer’s, my dad was well aware of the latest research. He even mentioned this to me at some point prior to the point his disease became so prevalent in his life. </p>

<p>As you can imagine, this is a terrifying prospect for me and my brother. Fortunately, there is no indication of alzheimer’s on our mother’s side of the family.</p>

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<p>re: post #30 (and, I, too, apologize for taking this topic off-topic)</p>

<p>My mom who’s EOAD (early onset) was diagnosed in her late 50’s (she’s sixty-five now). In hindsight we probably noticed small things prior to that. That we know of … her grandmother (paternal side), and uncle (paternal side) all had alzhiemer’s. However, they did not have EOAD. Mom is extremely intelligent; I remember her discussing the area of an odd shaped piece of property with my engineering husband. They used calculus; neither wrote a thing down but a scribble scrabble here and there. Totally over my head … way, way over. I do not believe that she ever stopped learning new things, mostly through reading and travel … but she was totally engaged in life.</p>

<p>zebes, noting the obvious genetic component and trying not to dwell too much</p>

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<p>So a response to paying3tuitions’ question about removing impediments:
I am a hospice nurse ( a job I love) and I often talk with families about making it possible to allow the patient to let go. This comes up a lot in the use of morphine and other pain meds and sedatives. We use these medications to help people be comfortable and it is not uncommon for a patient to die after getting the prescribed and appropriate dose of medication. The meds do not kill them but may allow them to relax enough to let go. I try to talk with families about this when we get into the actively dying stage because it is easy to feel you have done something wrong. </p>

<p>We also talk with families about other impediments to dying. Some patients need to wait for people to arrive and some for people to leave. We often give families a wonderful book called Final Gifts: Understanding the Special Awareness, Needs and Communications Of the Dying by Maggie Callanan and Patricia Kelly. </p>

<p>I love hospice nursing because I get to give care that is focused on what the patient and family want in this time of transition and the “shoulds” go away. I don’t need to try and convince people that they should do this or they shouldn’t do that, instead I get to help them use the time and energy that they have doing what is important to them.
In Peace
Ellen</p>

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<p>Thank you so much for posting, Ellen! Very illuminating. </p>

<p>I shall chase that book, “Final Gifts…” too.</p>

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<p>^^^^ I second the above post- Thanks, Ellen for sharing</p>

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<p>thanks Ellen.</p>

<p>There is a big difference between addiction and tolerance to morphine or the other opioid drugs. One may need 5 mg of drug to bring down their pain in week one and may need 20 mg for the same pain relief in week 3 because their body has gotten used to the drug and it takes more to lower the pain. This is tolerance not addiction. The pain may also be getting worse due to disease progression. Addiction is seeking out the drug for the high vs for the pain control. </p>

<p>I second the book “Final Wishes”. It gives many examples of people who hold on for occasions like the birth of a grandchild and then die shortly after. There are also many stories of people having “nearing death awareness” where they see and talk to people who have already died. This is very comforting to the sick.</p>

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<p>Mini - I never knew you worked as a hospice nurse. Awesome! While there seem to be pockets of attorneys, accountants, etc. on CC, we can now say we have a pocket of hospice workers!</p>

<p>Another booklet that is so enormously helpeful is Gone From My Sight. Families rave about this booklet after reading it. I often suggest leaving it at the place wherever the patient is as (if it’s a nursing home or hospital especially) so that as loved ones come in, they can pick it up and read through it pretty quickly (less than an hour). Ninety percent of the time, families relate that their loved one pretty much followed the pattern in the booklet. Two great resources mentioned here now.</p>

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<p>ok - after going back and reading the latest posts, and how I responded waaay too late at night, I see I erred in assuming mini is a hospice nurse (I did think, hey, not too many male hospice nurses, but they are out there). I neglected to see it was signed by Ellen, whom I assume is mini’s wife. I still say we have a pocket of hospice workers represented on this thread.</p>

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<p>Ms. Mini it is (the greater half).</p>

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<p>Yes, I am the nurse, David would be a terrible nurse, for one thing he doesn’t do gross well. We do have 2 male hospice nurses in our hospice and a few more in home health.
What part of the team are the rest of you? (You may have said but I forgot, it has been a long week.
Ellen</p>