Dwight entered hospice (at home) on July 16, 2012, due to deterioration and infection of his hips and pelvis, secondary to the paraplegia he had lived with since 1979. Hospice is for people who are probably in the last six months of life, so no one expected Dwight to live as long as he did. He died on March 6, 2016.
Dwight's funeral was held on March 9, 2016, at Saint Luke Evangelical Lutheran Church in Devon, Pennsylvania, The Rev. Susan K. Ericsson, presiding. His remains were interred in Mount Vernon, Iowa, on June 12, 2016, The Rev. Dr. P. Mark Achtemeier, presiding.
August 26, 2012
As most of you are aware, Dwight has been trying for the past couple of years to heal from a serious pressure ulcer on his left hip. A part of the wound was failing to heal, and on June 30, in an effort to figure out why, Dwight had an MRI of his hips and pelvis.
The MRI showed that the left hip joint was septic (meaning there is infection in the joint itself), that his right hip showed end-stage degeneration, as did several areas of his pelvis, and that infection was disseminated throughout his hips and pelvis.
It was clear at that point that this was not something from which he could recover, and that our goals of care needed to shift from healing and restoration, to management and comfort. He has been on hospice care (at home) since July 16.
Since then we have been cherishing our time together with our son, Mark, who is 11 [now, in 2016, he is 15]. We have also received many visits from family and friends, and Dwight has very much appreciated the opportunity to see and talk with so many people who are important to him.
Dwight is taking an oral antibiotic that is helping to contain the infection. He is increasingly fatigued, but is not in any pain, and can eat and drink normally. We anticipate that at some point the infection will spiral out of control, but it is hard to say when that will happen.
March 2, 2013
Given that Dwight has been on hospice for so long (going on eight months now) and seems to be doing so well (fully present and engaged with family and visitors), it might be time for a refresher on our medical decision-making process, just in case anyone is wondering why we're doing what we're doing.
As we've noted on various occasions, Dwight's problems with pressure ulcers and wound healing (predictable complications for people with paraplegia) date back several years, and he had been in and out of the hospital since 2010 in an effort to heal the most serious of these pressure ulcers, the one on his left hip. A part of this wound was continuing to fail to heal, and in June of 2012 an MRI revealed why: the hip joint itself was septic (infected), and the rest of his hips and pelvis showed widespread deterioration and infection.
At this point Dwight could have chosen to have surgery on the septic hip. This would have meant admission to a teaching hospital (Hospital of the University of Pennsylvania) and an orthopedic surgery in which the hip joint was filleted open, scraped clean, and packed open. Every few days thereafter he would have been returned to surgery and the procedure repeated until the surgeons were satisfied that there was no infection remaining in the joint. At this point they would have called in a plastic surgeon to put together whatever was left of the hip. The stated purpose of all this would have been to keep Dwight alive, but he would never have left his bed again, because he could not have sat up--too much of the hip joint would be gone. (In other words, survival would have been privileged over function.) He would also have had to spend a minimum of three months in the hospital, undergo multiple general anesthesias (a terrifying prospect in its own right, given Dwight's prior experiences with general anesthesia), be isolated from his family and friends (because he would be in a hospital twenty miles from home, in the middle of a big city with astronomically expensive parking), be subjected to medical tests and procedures all day every day, be taken care of by a rotating crew of strangers, and be exposed to all the pathogens that hang out in hospitals. And (here's the kicker)--all this would have been focused on the septic hip, which was only part of the problem (the deterioration and infection of the rest of his pelvis, both bone and soft tissue, being the rest of the problem). So even if this had "worked"--i.e., if he hadn't died in surgery, or from a hospital-acquired infection, or from all the trauma associated with hospitalization--then they'd have wanted to do more surgery on other bits of him--which would have meant more anesthesias, more months in the hospital, more tests and procedures, and so on and so on, world without end.
In short, a decision to go into the hospital would have been a decision to die in the hospital. More than that, it would have been a decision to live an absolutely miserable, isolated life in the hospital, while undergoing "treatment" that any reasonable person could see was futile.
That is why Dwight chose hospice. He did not choose hospice because he had "given up," or because he did not care whether he lived. He chose hospice because he wanted to spend the rest of his life at home with his family and friends, and not in the hospital, alone and miserable.
At the point that Dwight entered hospice (July 16), it was not clear whether choosing hospice would shorten his life (by allowing the infection to progress unchecked by surgery) or lengthen it (by sparing him the trauma of hospitalization and surgery). It turns out to have been the latter. We find it impossible to imagine that Dwight would still be alive, had he gone into the hospital; and even if he were, he'd have missed all these months that he has had, at home with his family and his friends. He sees Margaret and Mark every day. He was home for Thanksgiving. He was home for Christmas. He was home for Mark's twelfth birthday. Hospice was, and remains, a choice for life--for all of our lives.
We know, from comments made to us by a few of our many visitors (hundreds by now, and the parking is free!), that it may seem odd that Dwight lives on and on and never sees a doctor. If we really care about his well-being, shouldn't he be going to the doctor, or having another MRI, or something, you know, just to see how he's doing? Well, no. Even having an MRI would mean ambulance rides and all kinds of physical and psychological stressors that could well destabilize the delicate balance that is Dwight's current state of health. And the only thing a doctor could do for Dwight that isn't already being done for him is put him in the hospital--and Dwight is not going to the hospital, for exactly the same reasons that he didn't go there last July. He does not want to live or die in the hospital. He wants to live at home, and, when his time comes, to die at home.
What it comes down to is this: the whole reason Dwight is still alive is that he is at home, where he is comfortable and well cared for and surrounded by his family and friends. So while to the untutored eye our approach to Dwight's life and health might look passive (he just lies in bed all day, rather than "going to the doctor"), in fact it is very active--every day we take the best care possible of him, because we value him and his presence with us. And that means staying at home, on hospice.
March 26, 2014
It's been a long time since we gave a specifically medical update on Dwight's condition. That probably is mostly because we don't really think of Dwight's condition in medical terms--since we've decided never to hospitalize, under any circumstances, why bother worrying about whether he is more or less sick? But for what it's worth, here's our current sense of how he is. As all readers of this journal are aware, Dwight is unable to leave his bed, due to the deterioration of his hips and pelvis from all the years he spent sitting on them as a paraplegic.
The wound on his left hip (the one that leads to his septic hip joint) continues to devolve at a glacial pace. The circulation in his lower legs and feet is not what it might be, and we're always trying to keep the pressure off his toes and to heal persistent wounds on a couple of the toes. The drug-resistant bladder infection he picked up in the hospital three years ago seems to be either gone or else well-controlled by the oral antibiotic he takes every day. He has not had any significant chills or fever more or less since we can remember, although he does get cold sometimes and likes to have a hot water bottle when that happens.
His color is good; his appetite is mostly pretty good. Cognitively and relationally he is completely intact, which is a mixed bag: this is the reason we can have so rich a life together, but it makes his dependence and limitations hard for him to bear. In our Christmas letter we characterized Dwight's health as "stable but fragile," and this still holds true. That fragility is also hard to bear; it is difficult to live with the reality that he is one infection away from the end. (Boy, are we glad that all of Mark's illnesses this winter have not included either influenza or pertussis, and that whatever it is he did have, he managed not to give to Dwight.)
All this living on the edge is wearing on all of us, but if we have to live on the edge, it is good to be there together, the three of us.
January 4, 2015
Since we are still at the beginning of the new year, perhaps it is a good time to review the status of Dwight's health, and in particular the changes that have happened over the past year. There is a lot that is the same, like his diagnosis (osteomyelitis, i.e., bone infection, specifically in his left hip) and underlying condition (paraplegia, which Dwight has been living with for 35 years now), and the reasons for continuing to choose hospice (since what ails Dwight cannot be fixed, the point of his care is to make him as happy and comfortable as possible, which is what hospice--and palliative care more generally--is for).
Then there is the big new complication/preoccupation, which is the wound on Dwight's left foot. This began last spring, when Dwight got a new bed to replace the old bed he had been in for the past two and a half years (October of 2011 to March of 2014). The new bed was longer than the old one, which seemed good--now Dwight's feet wouldn't hang off the end of the bed (remember that Dwight is 6' 8" tall, so it is the rare bed that is actually long enough for him). We didn't realize until it was too late that having his feet hanging off the end of the old bed had actually been protective. Now, with his feet contacting the bed surface full time, a pressure ulcer had developed on his left heel. (His right foot is turned in a way that distributes pressure more evenly, so he has not had trouble with that foot.) We first noticed the wound on Dwight's heel sometime in April, a few weeks after he got into the new bed. By a week or two later it was clear that the wound was serious and deep and needed debriding (i.e., the dead tissue needed to be removed, in order to reduce the risk of infection and facilitate healing). Hospice doesn't debride wounds, and Margaret didn't have either the expertise or the instruments to do this herself. So, we called our family doctor and asked whether he could find a way to help with this. In response, the family doctor asked a friend of his, a vascular surgeon with an interest in peripheral circulation and wound healing (which is a fancy way of saying that this physician cares for a lot of patients with diabetic foot ulcers), to come and take a look at Dwight's foot.
This is the doctor whom readers of this journal know as Dr. C. He first visited Dwight in early May, and has been faithfully visiting ever since, as the acute and infected wound on the heel has, though a series of unanticipated twists and turns, become a chronic but clean wound on the top of the foot (in the process of addressing the heel wound, there was damage done to the tissue on the top and bottom of the foot; eventually the heel and the sole of the foot healed completely, but the top of the foot devolved and had to be nursed back to relative health over a period of many months). The really interesting part of this story, though, is not the wound itself but the experience this has given all of us of the kind of old-fashioned doctoring that is all about the relationship and the tincture of time. Yes, there have been a lot of new-fangled wound care products that we've used on Dwight's foot over the past number of months, some of which (like Cutimed Sorbact) have really helped. Most recently, though, we have been dressing the wound with nothing fancier than petrolatum-infused gauze covered with a couple of ABD pads, all held in place with roll gauze and then an ACE wrap over the top. The wound is moist and pink and well-vascularized (i.e., it has good blood supply), and exudes so little fluid that the dressing only needs to be changed every three days. Yes, it would be nice if it would close (i.e., by scarring over), but it hardly matters; as long as it is clean and stable, it is "beautiful!" (as Dr. C said when he looked at the wound today).
The other medical development of note is the antidepressant Dwight started taking a month or six weeks ago, whenever it was. He feels so much better, so much more himself, so much more able to navigate the ups and downs of life with cheerful good humor. Dr. C hadn't been here in awhile (with the wound so stable, we've been mostly keeping him up to date with photos sent by email), and so was exposed to the full force of the change. "He's like a completely different person," he said to Margaret, wide-eyed, as he was leaving. "When these psych meds work, it's like a miracle." We hasten to add that life is not exactly easy, for Dwight or for any of us. But we're doing our best, and, for now at least, it seems to be good enough.
October 8, 2015
Well, it was bound to happen. Dwight is being discharged from hospice. Before anybody panics (thinking that we may lose services) or rejoices (thinking that he is getting better), let us assure you that neither is the case. He is not getting better (as we wrote yesterday, he continues to lose ground, at an infinitesimally slow pace), and we will not lose services, or at least not in any way that makes a difference to us. The hospice agency has a home care division, and Dwight will be transferred to the home care side of things. The wound on his hip qualifies him for skilled nursing services, which means his nurse will continue to visit him twice a week (she does not usually see home care patients, but since she has been his nurse for three years, since he first entered hospice, she will stay with him). Home care patients are eligible for a maximum of three visits per week from a home health aide, and this is how often Dwight's home health aide comes, so that will stay the same, too. The same social worker will continue to visit. The hospice chaplain will not come, but since we have plenty of pastoral care from other sources, that is fine. Dwight's prescription medications will now have to be prescribed by his primary care physician rather than the hospice physician, but that is fine, too. We don't have to do anything to make this transition happen; the hospice agency and the insurance company will sort it out. In fact, this would have happened a long time ago, if Dwight were on Medicare. It is only because he has private insurance that he has been allowed to remain on hospice for so long while declining so slowly. So there we are.
October 15, 2015
Okay, false alarm.
A week ago, Dwight's hospice nurse informed us that the administrative higher-ups had decided that Dwight was no longer "hospice-appropriate" (meaning, he was declining too slowly to be considered "dying right now") and that they were going to transfer him to the home care side of the agency. He would continue to receive essentially the same services, so being on hospice or not on hospice was more or less a distinction without a difference. Still, it was kind of weird to think of Dwight as having graduated (as they say) from hospice, like it ought to make a difference, when in fact it doesn't.
So today the hospice nurse informed us that the administrative higher-ups have changed their minds, and are going to recertify Dwight for hospice, rather than transferring him to home care. The transfer wasn't going to happen until the end of the month anyway, so now it looks like it won't happen at all, like it is truly a non-event. So now that's kind of weird--first he was going to graduate from hospice, and now he isn't.
March 6, 2016
As many readers of this journal are already aware, Dwight died today. He was 54. He is survived by his wife (Margaret) and son (Mark, age 15), his parents (Norman and Marlyce Peterson), his sister (Bonnie Hawkinson), his brother (Kurt Peterson), and a crowd of nieces and nephews, aunts, uncles and cousins (not to mention colleagues, friends, and former students). Dwight's funeral will be at Saint Luke Evangelical Lutheran Church in Devon, PA, at 2 PM on Wednesday, March 9, with a visitation the preceding Tuesday evening, March 8, from 6-8 PM (also at Saint Luke Evangelical Lutheran Church).
Dwight became acutely ill last Wednesday around noon or 1 PM, when he called Margaret (who was out running errands) to tell her not to bring him a cup of coffee because he felt very unwell. Margaret arrived home to find him lying rigidly in bed, saying that he felt that if moved he would throw up. In retrospect we can see that he must have suffered some kind of GI event. He started throwing up, first blood and then bile, at 4 AM on Thursday, and pretty much didn't stop after that. He had a terrible night last night, with much pain and agitation. Neither he nor Margaret got any sleep, and a hospice nurse was here for several hours, assessing the situation and making recommendations for care. Among these recommendations was transfer to Penn's inpatient hospice facility in Center City Philadelphia, where his symptoms (especially his pain) might have been more effectively treated. We declined this transfer, for reasons we had thought through long ago: an ambulance ride would have been deeply distressing and destabilizing to Dwight (who as a 6' 8" paraplegic is too big to fit on a gurney and too fragile not to be injured by the experience), the hospice would not have had an appropriate bed for him (as a 6' 8" paraplegic, he needs a very specialized bed, and we have one at home, and they wouldn't have had one there), and (most specifically to the point) Dwight wanted (in his words) to die in his own damn bed, in his own damn house. In the end, his pain and agitation were not adequately treated, which we deeply regret. But everything is a tradeoff, and being at home was the most important thing to him and to all of us. So there it is.
Dwight was sort of calmed down by 6 or 7 in the morning, but was clearly too unstable for Margaret to leave him, even in the company of relatives, to go to church (which was the place to be this morning, given that it was confirmation Sunday and Mark was scheduled to be confirmed). So, Margaret stayed home with Dwight, along with Norman and Kurt (who had already been planning to stay with Dwight), while Mark went off to church with Marlyce and Bonnie. Those of us who stayed home were consoled by the fact that Saint Luke Church had arranged to have the confirmation service live streamed specifically so that Dwight could see Mark be confirmed. Everything worked as planned, and although Dwight's pain and agitation waxed and waned all morning (with Margaret and Kurt scrambling to do what they could to relieve it), Dwight was in fact able to watch the service, and in particular the parts of it that involved Mark. After the service Mark came home, full of pride and smiles at having achieved this milestone (and looking very spiffy in the black blazer and tie he had purchased for the occasion), and Dwight was able to tell Mark how pleased and proud he was of him, and to share in the whole family's celebration of the occasion.
At the same time, it was increasingly apparent that Dwight's time was drawing near. Margaret had already noticed some signs of the approaching end of life (mottled skin, noisy respiration, confusion) and the hospice nurse who visited sometime in the morning noticed more (decreased blood pressure, increased pulse and rate of respiration, cold extremities). So were we looking at hours or at days? Probably somewhere in between, the nurse said. Then lunchtime arrived, so Norm, Marlyce, Kurt and Bonnie went out to get some lunch (Mark decided he preferred to stay home with Dad). They had only been gone a few minutes when Dwight became very agitated and Margaret realized she needed help in taking care of him. She called Kurt, who came straight home, followed by everyone else. And as they arrived home, something happened with Dwight--some acute event of some kind--and it became clear that he was dying right then. Everyone gathered round Dwight's bed, he became very still, his respirations were barely noticeable for a minute or two, and then he was gone.
We are so struck by the fact that Dwight's parents and brother and sister (as well as Margaret and Mark) were all at his bedside when he died. This had been his wish, but as his parents and siblings live at a distance, we knew it might not happen. It was a special gift that they were all here, and all with him at the moment of his death. We are likewise struck by the timing and circumstances of his death, namely within hours of having seen Mark confirmed. It was another special gift that members of Saint Luke Church took the initiative to live stream the service just for Dwight, and it meant so much to Dwight and to Mark that they were able to reach that milestone together. It is as if Dwight was able to get Mark, if not all the way to adulthood, then at least out of childhood. Mark turned 15 last week; he was confirmed this morning; and Dwight was here for both events.
The afternoon was busy with all the things that have to happen when somebody dies: telephone calls, decisions about services, visits from the hospice nurse (to prepare the death certificate) and the pastor and the undertakers. In the evening we all went out for dinner--the first time that Margaret has accompanied a family party out of the house for about five years (usually she sends Mark while herself staying home with Dwight). And then we (Margaret and Mark) came home to an empty house.