View from the Chair: When Home HD Must Stop
In a recent blog post, Dr. John Agar raised the issue concerning advocacy, policy, and responsibility of clinics regarding home HD patients who are judged no longer competent to manage their own dialysis and/or whose carer(s) may themselves have developed handicaps that put the patient at risk. A range of thoughtful responses to the article prompted my attempt to collate and summarize the gist of thinking.
Though not a popular option, one respondent said he would be happy to return to in-centre dialysis in the event of severe loss of competence. Others mentioned next of kin/carers who would be capable of administering the dialysis—or who might need a break.
- “I think it's at that point, and only then, that we should be required to have a care partner. If I couldn't safely perform my dialysis treatments myself, I'd choose to hire someone to come in and help me. My son and I talked about this and he now knows my wishes.”
- “I am on home HD. My hubby helps a bit. But he is ten years older than I am (73) and he is the one I worry about. He isn't in the best of shape. At some point it will become too much for him. Hopefully not for a few years. Hopefully I will be able to continue home HD even without his help for as long as I need to as I am in good health except for this. But we all get old and frail at some point. I hope I have the wisdom to recognize it. I don't want to be a pain in the butt to others…”
A death at home requires, in most cases, a coroner’s report. Should a death relate directly to a dialysis administration error, inevitable questions will reflect back on who was responsible for the error or for failing to detect the approaching event (carers or next of kin)—and whether there should have been closer liaison with the training clinic in the case of aging patients or those with developing co-morbidities.
- “I’m very pragmatic,” said one home HD patient. “When I was discussing doing home HD without a partner, I was asked what I would do in an emergency. My response was ‘worst case, I'd die, and that's ok." The team all said "We don't want you to die." I thought it was nice that they cared—but never gave a thought to maybe they were concerned about the program. I don't like it but I do understand. Understanding, however, doesn't change my feeling that it should be the patient's decision to continue home modalities or go in center. Certainly if there are vision or dexterity problems they should be discussed and the patient should acknowledge they are aware of the risks. Cognitive decline is harder to deal with, not only because the patient may not recognize it, but because it's difficult to know if they really grasp the risks of continuing home treatment. I'm all for educating those involved in post mortem exams. And for having documentation that the patient understands the risks in continuing home modalities when problems become obvious (or suspected).”
- “Perhaps it could be as simple as having the patient post a placard to their machine or bed stating the above. ’Police and emergency services: this is not a crime scene. Please allow home dialysis staff immediate access to my body without disturbing the scene, so they can accurately evaluate what happened here. This will allow them to make changes to their program that will make home dialysis even safer for their other patients.’ That's a little long but you get the idea. If police and EMS need to be aware that there's a third-party needing undisturbed access for a valid reason, there's nothing preventing the patient from posthumously advising them. Not saying it will work, but there it is.
At one end of the spectrum is a patient who becomes aware of his/her own declining competency well in advance—not only in terms of parameters such as eyesight, memory, dexterity, and co-morbidities—but also through the relentlessness of the aging process. Anticipating such a time that running the dialysis modality will become increasingly hazardous, s/he draws up an Advance Directive, appoints a PoA, notifies the GP—and perhaps tells local hospice that their service would be requested in the nearing future. On bringing home HD to a close of his/her own volition s/he retains the independence, dignity, and self-directing will that served so well during the years of home HD.
- “If I ever get to the point where I can't care for myself at home that's when I call it. I'm sorry, but no one is forcing me in-center on a permanent basis, not for any reason.”
- “Why should it be any different than normal aging and estate planning? Everyone ages and dies eventually. Patients and people get to choose how they live and quality of life they want and should not be forced back in center if they don't want to. However, understanding risks and having discussions with their medical professionals to make the best informed decisions for themselves if appropriate, especially when lab work shows home HD or PD is no longer helping adequately with their health but for their own comfort and mental well being, if they decline in center and willing to have the risks associated with treatment until such time they change their mind or their life terminates due to failing health, that's a human choice and a human right. No different than one refusing to go to nursing care, hospice or palliative care.”
- “By the time you and I are unable to handle home HD, we may be in such bad shape in all respects that we wont be able to do much of anything anyway, or live independently. I actually find it comforting knowing we have a choice in the matter, to end treatment if we want to.”
- “One of the major facts that needs to be bought up, at least, in Australia is the fact that if you do have to go back in centre or hospital, is that you are only able to get 4 hour dialysis 3 times a week. This is just to keep you alive—not healthy.”
The other end of the spectrum, and least desirable scenario, involved the patient in denial who believes “all is well” and resists with vigour any suggestion to terminate home HD. The situation is exacerbated if the patient’s carer and/or next of kin is also unable unwilling to accept the defining signs. Here, a decision by the Power of Attorney (PoA) is vital (provided one has been appointed) or it will be necessary to deploy the services of an independent observer. With no serious thought to possible consequences by both the patient and next of kin, a sudden death in the home can lead to humiliating consequences: investigation and probing by the coroner, possible police scrutiny, trauma for family, and poor reflection on the clinic and staff with whom s/he was associated. Cognitive decline is harder to deal with, not only because the patient may not recognize it, but also because it's difficult to know if someone really grasps the risks of continuing home treatment.
Between these two polarities a range of perspectives demand attention—yet even an annual checkup on procedure by a nurse is invasive and can feel like a failure.
- “There is no doubt that this is complicated. From my perspective, a contract right out of the gate, suggesting that home wasn't a 'long term' option would probably have scared me right off. On the flip side, early planning, i.e., when a patient is fully engaged/able to make decisions about best possible care, is probably what needs to happen. Perhaps the most realistic is a third person or power of attorney, though…As a young, healthy (minus the ESRD - lol!) female, I am frustrated/and dare I say slightly insulted when I have a nurse come into my home once a year, for a visit that is called start to finish. The clipboard comes out, I test the water, start up the RO, set up the machine, cannulate, manage treatment, disconnect, and take care of the machine, whilst I am watched, to ensure that I still know what I am doing. While I understand the purpose, after many, many years, it still feels so invasive. This brings us back to the very start, I'm afraid... How do we avoid it feeling like failure?”
- “I think in part that some of the discussion needs to change, I know when mom first started doing home dialysis, so much emphasis was placed on how great it was because we were ‘taking back our freedom,’ ‘putting our care in our hands,’ ‘being in control of our health,’ etc. Which is all very true, but when there came a time that mom could no longer do home dialysis, it felt, consciously or perhaps subconsciously like we'd failed, like we were giving up control of our part in her care and health. What was at one time a huge motivator and positive, became something that when we had to switch from it was now a source of shame and failure. I don't know how to fix that, but it was something we personally experienced.”
Clearly, this difficult to address issue raises many intense feelings, and concerns about patient rights.
- “Here in the states it is common to have a DNR - Do Not Resuscitate. I am 60 years old and have minimal comorbidities. I have prepared my end of life documents with a medical power of attorney and a living will. If I become mentally incapacitated and can no longer make my own decisions, my wish is to stop dialysis and become a hospice patient. My children, one of which is my medical power of attorney all know this to be my wish as we have thoroughly discussed it. As for being physically incapable of performing dialysis at home, two of my children were trained and are capable of providing that support if I need it. If I am physically incapacitated but still mentally capable, but have something major like extensive paralysis from a stroke, I fully intend to make the decision to terminate dialysis myself. I have tried to plan ahead and would never want to jeopardize the home dialysis community as a whole. As a nurse I have seen too many patients held at death's door by every possible intervention because family could not let go. I don't want to put that decision on my children, so I have made every effort to have it be my decision not to burden them. At what point does it become abuse to keep a frail or demented patient on dialysis or other life prolonging medical interventions? When the quality of my life has diminished to that degree, I want to die comfortably and peacefully at home and not be forced to dialyze in center or anywhere else.”
- “If I die, I am at home where I wanted to be. And, frankly, I'll be gone, so how can I worry about it? To me it no different than having a stroke in your sleep etc... And, statistically, dying during dialysis at home is even rarer. However everyone should have the talk with family team and anyone they trust regarding your wishes as you age. Talk early, talk often, we say.”
How, then, do we ensure that both (or all) parties—the family included—agree to pull the home pin when the time comes? Can we afford to be proud in the matter of life and death?