<p>OH, JYM626 - I am so sorry. This must be so difficult. I agree with other posters who suggest finding out if hospice might be involved. They will be of immeasurable help to you. Big hug and know we are thinking of you.</p>
<p>
</p>
<p>Yes, you can be grateful that your parents were wise enough and brave enough to name just you.</p>
<p>My in laws had their two kids as co executors for years & years, for decades even. This when the kids sometimes had disagreements.</p>
<p>Just last year they apparently changed from the two kids to an outside trustee! A paid person! The kids are older (50-60) and mature and get along just fine so it is bizarre they would change it now. It is also NOT an estate large enough to generate estate taxes so that is not the issue. Weird, but as I have been an executor & trustee for the past year + and continue as trustee I can also appreciate the ease of simply letting it go and letting someone else do it.</p>
<p>Jym, I am so sorry you are going through this.</p>
<p>Now it sounds like the doctors are disagreeing about his care. Ugh</p>
<p>jym – There’s got to be one “attending” physician on his case – it might be helpful to grab that person as soon as he/she comes in tomorrow morning and get some agreement as to a plan, whether that’s hospice or something else.</p>
<p>jym, I am sorry this is prolonging your Dad’s suffering. I know that this is painful for you and your family as well, and I send you good thoughts.</p>
<p>Arabrab-
I am waiting for a call from the attending or the palliative dr. I was there for several days, left to beat the storm when my sibling stayed, and am now scheduled to return tomorrow. The palliative care team seems to be more on board with me and understands my dads wishes (there is a living will on the chart) but the primary attending is the one who wants to be more aggressive than is appropriate. They were going to discontinue his antibiotics yesterday but seem to have gotten pushback from the attending. I will inquire about hospice.</p>
<p>Jym626 - Oh, how stressful. I don’t think physicians mean any harm, but they sometimes have trouble shifting focus from curing to caring. Your dad is so lucky to have you advocating for him right now. It is so difficult, but you will never regret what you are doing.</p>
<p>FWIW, you can switch attending physicians. In an earlier hospitalization, my mom’s attending was switched from her surgeon to the hospitalist, to her great benefit.</p>
<p>And how did you do that without offending the treating doctors?</p>
<p>Sorry that you are going through this, jym626. It will be easier to judge things once you are back on site. If you are worried about offending someone, a method I often use is pretending to be naive and asking lots of questions. I don’t know how to explain it online, but I am pretty good at the “dumb as a fox” act. Who is the primary doctor? What exactly does the advanced directive mean? Do you think this is what my father really wanted? Ask lots of questions that you know the answers to that you can then make a decision for your father’s care. I know this is not easy. I went through it with my mother 11 years ago from 1000 miles away.</p>
<p>jym - Very sorry for your situation.</p>
<p>I’ve usually found that professionals respond to one approach or another. Perhaps you could inquire of the attending MD “Continuing antibiotics suggests you expect my father to improve. When do you anticipate we might be able to take him home?” This may not resolve the situation, but might start a dialogue.</p>
<p>I once switched docs within cardiologist group for dad. Not hospital situation, but obviously similar concerns.</p>
<p>I went to manager/scheduler and just stated I would like my dad to be seen by Doc #2 because I knew that he would be a better match, philosophy and style were more compatible with his needs. When she questioned a little more I did the old broken record thing and just stated the same thing over again. I DID NOT apologize. I was very gracious but firm. I did not mention doc #1 or anything about how he acted or why I didn’t want him. </p>
<p>Once again, my you will never regret what you do, only what you don’t do. {{{HUGS}}}}</p>
<p>My condolences, jmn626! Definitely call for hospice, and don’t worry one bit about upsetting the doctor’s feelings or whatever. You are your father’s voice, now that he does not have one - and you have the power to insist that they do what will be most comfortable for him. Unless there is a possibility of him recovering, everything should be done to help ease his transition (imho), even if that means asking that they up the doses of painkillers and drugs to help his anxiety/pain/ whatever - even though this may actually end up hastening his passing. I don’t want to go into specifics here, but, it really is hard to some Docs to let go of the “curing” part - and sometimes the things they do end up causing needless suffering. My thoughts are with you in this difficult time -</p>
<p>jym – Don’t worry about doctors being offended. They largely have pretty thick skins and often pretty big egos. Worknprogress2 gave some good suggestions. I’d probably be a little more direct and simply say that while I appreciate all the good effort everyone has invested, I think that it is time for transition to a hospice led team to ease his passing.
The social worker might also be of help on this front. </p>
<p>My mom’s surgeon was initially a little annoyed that he was no longer in charge of her case after we shifted her to the hospitalist, but we did the right thing for her, not his ego, and I don’t regret it. He came around very quickly.</p>
<p>Omg Jym…</p>
<p>I happen to be going through the same thing (with my mother) right now! So many similarities to each of our cases, right down to the unsupportive sibling with no cell phone!</p>
<p>Definitely call in hospice…my thoughts & wishes are with you. Being a caregiver is one of the hardest things to go through. I’ll pm you in a few weeks. Please take care of YOU too.</p>
<p>“it really is hard to some Docs to let go of the “curing” part - and sometimes the things they do end up causing needless suffering” Totally right, anxious mom. </p>
<p>Sorry, haven’t been following this jym, till today. Can primary care be turned over to the palliative team? In my hospital, they’re sort of an adjunct to the hospitalist group. </p>
<p>If the primary has been your dad’s physician for a long time, he may just be too attached, as well as attached to an older model of practice. I’d express sympathy for his position, and then ask for his or her sympathy and help in carrying out your dad’s wishes to the best of your ability, given the inevitable prognosis AND the palliative recommendations. If things continue to be at an impasse, the hospital likely has an ethics team you can ask to consult on the case. As stated above, the Social work/patient family services team can be of great help with some of these patient advocacy issues. </p>
<p>But I’m hoping hospice gets involved, pronto, and if appropriate, transfers him to either a nursing home with hospice support or to a free standing hospice, to free you from awkward go between issues with the attending. </p>
<p>Will be thinking of you, and hoping today brings less muddy waters. Hugs.</p>
<p>great lakes mom - I completely agree with your perspective regarding hospice care (not that I’m biased or anything!).</p>
<p>However, I do wish to clarify the criteria for free-standing hospices, especially given the up and coming nature of them.</p>
<p>I think the term free-standing hospice is being used in lieu of a hospice free-standing inpatient unit (IPU). Our agency has an IPU at two different locations. Due to Medicare standards, you have to meet certain criteria to be transferred to one of them. I’ll explain later why they can’t be considered a ‘home’ for the dying patient.</p>
<p>IPUs are often described by our staff as intensive care units for hospice patients. There needs to be supporting documentation for someone to be transferred to our units, such as unmanageable pain, extreme agitation or restlessness, caregiver breakdown/respite care for the caregiver, uncontrollable shortness of breath, excessive bleeding. This list is by no means all inclusive, but just some examples. IPUs are always considered a place of transition, with the goal of returning the patient to their home (whatever place that may be) when they are stabilized. That being said, the kinds of symptoms I’m talking about, that can’t be managed at home, are often ones that coincide with there being just a few days or maybe a week or so of life left, so 80% of patients who enter an IPU, usually die there. Once someone is in the final dying stages (this is determined on certain criteria not listed above), unless it is the patient or family’s wishes that they die at home, they will not be transferred out of the IPU because no one wants to risk having a patient die in transfer. </p>
<p>So, the key reason IPUs cannot become a place of a permanent last residence if a person has no symptoms that require the level of care given in an IPU is because that then puts hospices in competition with skilled nursing facilities for residents. Hospice is not in the skilled-nursing facility business, although some skilled nursing facilities are trying to start their own hospices (most of them have not fared well) within their own facilities. If IPUs start accepting non-symptomatic hospice patients and let’s face it, these facilities are heads and above nicer than nursing homes, then our referral sources from nursing homes will dry up. And no hospice can stay in business without referrals from nursing homes. </p>
<p>Unfortunately, this is the health care world we live in. I believe I was told it costs over $800/night to stay in our IPU. But Medicare covers it if there is a medical need, or a need that our level of care demands, and can’t be met in a skilled nursing facility. Our medical director does rounds in our IPU everyday and must document and justify the reason for the patient’s presence there. Medicare can (and will) audit us at anytime and make sure the criteria for IPU level of care is being met. Patients at the IPU receive a level of care equivalent to an ICU, meaning the ratio of nurse to patient care is very low, usually around one nurse to every 3-4 patients. Again, this ratio is needed because these people have acute symptom issues that cannot be managed at home or in a nursing home. </p>
<p>All this being said, one sort of ‘exception’ to this rule that I’ve seen happen in our IPU (and others) is ‘end-of-life’ care, defined as a patient likely has 1-3 days left (as assessed by our nurse and physician) and either the patient or the family doesn’t want the patient to die in the home - maybe there are young children there, or maybe it’s a psychological thing with family members who will continue to live in the home after the loved one has died (or someone who emotionally would be traumatized by someone dying in the home). So in situations like that, we’ve accepted patients in our IPU for the last couple of days of their lives, but even this is far from an exact science. There are signs and symptoms that someone is within a day or two of dying, but they’re not 100% accurate. Families know that if they choose this option, which requires waiting until these last 1-2 days, the patient’s condition is very unstable and they could die in the ambulance during the transfer (this has not happened to us). </p>
<p>So I just wanted to clarify the difference between a free-standing hospice (which is what is known as an IPU) and providing hospice in a home or skilled nursing facility. The model is not perfect, but any free-standing hospice/IPU will be held accountable to Medicare audits and must be able to document the level of care that is provided in an IPU.</p>
<p>As more and more IPUs are being built, I just wanted to clarify what they’re there for.</p>
<p>Of course, if someone is already in a hospital and the family chooses to keep their loved one in the hospital as opposed to sending them to an IPU, the hospital will also be held accountable to Medicare as to why they are keeping the patient in the hospital (i.e. what symptoms are the patient having that can’t be managed through regular administration of medications in the home or nursing home). I do believe some hospices now have contracts with hospitals and have designated floors or units for hospice patients, but again, they have to meet these criteria defined by Medicare in order to be reimbursed.</p>
<p>Thanks so much Terriwtt - I am going to cut and paste this explanation as I will eventually need to understand this. </p>
<p>One thing I wanted to clarify - I wasn’t suggest Jym use my words - my intent was to encourage her to express what she wants and her dad needs - and avoid talking or defending what is not working. </p>
<p>Thinking of you Jym (& Chocchip) - this is so close to home for many of us. I hope you feeling more at peace today and that your dad is getting the type of care that he needs.</p>
<p>terri, thanks for the great explanation of the interaction between hospice IPU/Medicare and hospitals. I know regulations changed at some point in the past year or so regarding IPU placement. My opinion was based on practice in my area (WI) and I do see pts being transferred to inpatient hospice when hospital level of care is no longer appropriate. If they come in from a nursing home, they often return there with hospice support. However I don’t see fresh nursing home placements if death is expected to be soon. Those nursing home beds are too hard to come by in my area. </p>
<p>Will have to ask our hospice liaison about more of the details of placement.</p>