Dying, Doulas, and Denial

This is a long post, unsurprising to anyone familiar with my posts. Please bear with me, lots to unpack here. Information on jobs working in death, including information on Death Doula training, courtesy of The Order of the Good Death

I am a part of the Death Positive community that is growing in recent years. Membership is very diverse in the backgrounds, ages, and life experiences of people with this interest. Many do not work in death or dying related vocations, some are moving into those areas and some are creating new ways of doing death and dying.
Doulas have become a popular choice for those making a birth plan, as someone there to assist with pregnancy and coaching/advocating during the birth. There was obviously some resistance from the medical community about the presence another individual with no legal or medical standing in the birth process, especially in light of the high percentage of litigation tied to obstetrics in general. But with time and persistence, doulas have carved themselves out a place in the team and proved to be an overall benefit to both the laboring mom and the overworked nurses.
Today, we are seeing a new group who refer to their vocation as Death Doulas, or Death Midwives. Seeing the parallels between the needs of the birthing mother and the dying person and their family, these are holistic advocates for the patient and family. They provide expertise on the dying process, comfort, and support. They also assist with end of life planning  and are family support and advocates through all that is involved in final arrangements, funeral, memorial, viewing, etc.

Death doulas are a response to observations that our culture has become very death denying, and that corporate funeral industry has created and promoted a lot of myths and perceptions that create the impressi0n that the dead body is a toxic and dangerous thing that must be removed immediately, embalmed for sanitation, and buried in a vault for safety. The medicalization of the dying process has also created a lot of fear from families about having the dying person at home. Folks are literally afraid of killing a dying family member, afraid that the person will be in terrible untreated pain, and afraid because they don’t know what to expect. Both the birth and death doula movements are responses to the perception that the patient and family are being inadequately supported in an overmedicalized and profit-driven system.

A challenge to both the birth and death doulas is that since they are not part of the medical system, they are not generally covered by insurance. So the patient or family must pay the cost out of pocket, which limits these services to those who can pay for them. Of course those in most need of such services are often those least able to pay for a private advocate. This also means that the person wanting to make a living providing these services is pretty limited in their options for employment. Hopefully this will improve in the future, but for now self employment seems to be the most common practice.

Screenshot of search for Death Doula Certification

My focus is on death doulas, which is what I will address here. A concern with the profession of death doula is the lack of consistent practice guidelines with professional oversight and guidance, currently a number of groups offer certification and training. I have no information at this point about the quality of the training, and certainly lack the funds to sample them! I am familiar with a number of folks who are training and practicing as well as quite a few who wish to do so. I hope to see some consolidation of training and practice along with a professional ethics guideline be developed.

 My experience in Death Positive communities and social media has been of folks really excited and motivated by the idea of making death a normal experience, and removing the fear and denial of death from our culture. This enthusiasm is very similar to what we have seen in folks coming into hospice care as well. That energy and positive attitude are wonderful. The issues arise when it becomes evangelical and proselytizing begins. I have seen it in hospice nurses quite frequently. I see it in these communities as well. It comes from losing the primary goal, which is to support patients and families in their final journey – on THEIR terms. Not ours. We are there to support and advocate for the needs they identify. We can offer information with our support, but we should never demand that they accept our point of view. It is not about us, or our needs. With hospice nurses the most frequent case of this I see is the belief that denial is a problem that they must solve. Breaking the patient or family’s denial is a goal that is discussed frequently. I disagree with this, and have support in this from a number of sources. Of course, for the person to be on hospice in the first place means they or their decision maker has had to agree to the plan and accept that the patient will be getting end of life care. In the past, when patients and families were having to fight the system to be allowed to die at home, this was not much of a problem. Today, with health systems making it practically mandatory and physicians sometimes failing to even communicate their terminal status to the patient, it is much more complicated.  There is also the issue of culture, which has a very strong influence on how families and patients talk about death. A cornerstone of hospice is that we don’t lie to patients or pretend that they are going to get better. Which is very much part of OUR cultural values. But frequently in some cultures, we encounter caregivers who forbid us to tell the patient that they are dying, who instruct us not to mention death, and ask us to not say the word ‘hospice’ either. This seems on the face of it to be a really big problem for a hospice team. How can we give care and support at end of life if we are not allowed to talk about end of life? But our role is to support the patient and family as they direct and with the needs they identify. Their culture has a different way of dealing with and addressing death than ours does. Some even have a different way of conceptualizing what it means and how it works. My job is to figure out how the family need to be supported and give that support. The cultural differences and the barriers of language and trust can make this extremely challenging. But trying to enforce my cultural construct of a ‘good death’ on someone else is absolutely not the way to give them a good death, nor to support the family. We have to assess what they identify as a good death. So we find a family member willing to communicate to us what they need and we honor that. Which brings me back to the death doula (or any new person to end of life care) – I see a lot of folks expressing what they want to ‘give’ to families, what they envision their role and support to look like. They have an idea of what it is ‘supposed’ to be, how it ‘should’ work, and want to make that happen. Which is not what is needed. What is needed is great skills in spending time with families and finding out what they need, how they wish to be supported, what they see a good death looking like. The time to spend doing that is the place that I can see doulas being a wonderful addition to a hospice team, or an alternative if hospice is not available or desired. Because honestly, as a hospice nurse the most important part of my job, the part that helped families the most, was being available at 2am when it is dark and everyone is asleep, the doctors office is closed, and a caregiver is worried or afraid. Obviously, the ability to sit on the bed adjusting the IV pain meds during a crisis is important. But that was needed a lot less often than those 2am calls.

 If end of life care is your calling, be sure to sort out your own issues before you begin caring for others. In the past it was common for hospices to require that a person have had a year since they had a major loss. Obviously this is not practical once you are employed, but it addresses a common problem. Folks who are processing a death and are working through their grief often see giving support to others as a way to help themselves. It is common, it is admirable, but it is not what you are there to do. Because what happens is that the person who is there to help winds up spending too much time talking about their own loss. It is hard when you start working with the dying not to do this, and it hard not to do it when you have been working with the dying or a long time and have seen similar issues. Part of good practice is to really think about what you say before you say it, and ensure you are focused and present with the folks in front of you.

Hospice teams tend to be quite protective of our patients and their families, and we are protective of our practice as well. Because we came out of the same recognition of the lack of support for the needs of the dying person and their family, and eventually managed to carve out our place and actually become a funded benefit via Medicare and many insurances. Hospice is a special pocket of the medical system. We have benefits that other practices do not, and protecting those benefits that allow us to give good care is important. We deal in large amounts and large doses of narcotics and other scheduled drugs, and have been able to have them delivered or mailed so families do not have to be constantly running to a pharmacy. We have a lot of latitude in management and dosing of those controlled drugs in the home. Especially during the current opiates ‘crisis’, it is critically important for us to maintain the ability to do this in order to ensure we can give appropriate pain control in the home – the foundation of home hospice. We have been very strictly self-policing in this area for a long time. As hospice nurses, we depend upon the trust of physicians to prescribe and to trust our judgement in assessing and evaluating patient needs in the home. So if we observe someone whose issues or competence threaten that relationship we will quickly deal with the problem before it becomes a problem. Drug diversion by hospice workers is extremely rare in my experience, we sort those folks out before they get into a home,  or identify and remove them quickly. Patient friends and family are much more of a problem, and we have a lot of strategies for dealing with those issues. Once again, because being seen as a source for controlled substances to get out into the community risks the trust of the physicians we work with and the ability to continue giving care at home. I worked in a major metropolitan area where there were a number of hospice agencies and we all had great relationships and professional respect from the physicians we worked with. I have also worked in a much smaller city where there had been lots of turnover of hospice agencies and some issues with diversion by employees. It only takes a couple of issues to poison the well. Local physicians saw us all as potential risks to their licensure and it was much harder to do our jobs. All this to explain why we might be more resistant to another care provider coming into the home to assist who has not been subject to fingerprinting, background checks or state licensure requirements like we are.

H0spice nurses see ourselves as advocates for the patient and family. Our social workers, CNAs, chaplains, and volunteers see themselves in this role as well. We have frequent team meetings to discuss each patient to ensure that we are all on the same page. And nurses can be control freaks – shocking, I know. Putting someone not on the team in the home to advise our patients – especially if we have no idea what that advice might look like is problematic for us. I work hard to establish trust with families, and depend on them to let me know what is really going on so I can give good care and guidance. The flip side of that is that since we are working for an agency that needs to control costs, we are very often limited in the time we have to spend with the families. Nurses very often work all day and rotate on call at nights, so sitting up all night with a family is rarely an option. And that is often the one thing that the family needs the most.

I think Death Doulas are a great thing, and I look forward to seeing the profession really grow and gain acceptance. We need more people who are able to figure out what families need and how to provide that, and this is where folks doing this work are going to shine.  This strikes me as a great opportunity for retired and disabled nurses as well. Those of us who can no longer physically practice, but have the knowledge and the heart to help. My personal practice when I was working as a nurse was probably closer to the role of a death doula than a hospice case manager. I am a night person, so while I did love doing case management and developing a relationship with families, I tended to request a position doing on-call full time. This took pressure off the other nurses, and allowed me the luxury of spending more time with families at night, doing crisis management and attending deaths. (Also lots of disimpactions, but that is another post!) I got to do lots of education, working with mortuaries at the time of death, and just sitting with the dying.

The ability to stay with the family through the death and continue that level of support after the death is also a huge need, and a great service. Being able to support and assist families in making arrangements, whether they desire a traditional (in modern terms) funeral or a ‘green’ alternative (traditional in pre-modern terms!), fills a need that is growing. We are living to be older, and there is a lot more reliance on our kids and grandkids to do the heavy lifting, literally and figuratively. Having more skilled support can only be a good thing.

My goal here is to communicate why those wishing to work with the dying, whether as doulas or in another capacity, may find some resistance from the established hospice structure. It has moved from being a revolutionary and controversial practice into infrastructure – which is not a bad thing, but it can lead to insularity. Keep at it. Be willing to demonstrate your ability to assist without imposing yourself on the needs of others. Evangelize on social media, if you must. But in the sacred space of the dying, be there for them on their terms. And thank you for being a helper!

Thanks for reading!

Rethinking Comfort Measures

We talk a lot about comfort measures in end of life care. After discussing the futility of further treatments, conversation moves to those measures intended to give the very best quality of life possible for the time remaining.
When hospice care gets involved, those conversations also often have an elephant sized unspoken criteria sitting in the room – costs. Since the hospice care provider is responsible for all costs associated with the terminal diagnosis, keeping those costs down is a major goal. This is not straightforward profit-seeking and greed, either. We are all aware of how breathtakingly expensive medical treatments and drugs can be, and any organization that spends more than they take in is not around to provide services for long.
In my experience, this cost savings goal has led to some mythology in hospice care that needs to be addressed. I have had mutually exclusive teaching and instructions from different medical directors on the efficacy of various modalities that could be directly linked to financial, rather than evidence-based rationales.
I also want to address a second aspect of comfort measures. While our terminal patient is the primary focus of our interventions, we claim the entire family (as the patient defines them) as our focus as well. And sometimes, an intervention that is futile may be appropriate, in my opinion, for the well-being of the family. If that intervention is not harmful to the patient, will not cause discomfort, and is not overly expensive, the futility of it may be secondary to the comfort of the family. Examples would include a dose of antibiotic to a dying patient – futile in even extending life, but gives the family a sense of ‘everything was done’. This can also be part of a negotiation to comfort a particular family member who is struggling and demanding more extensive futile interventions. More discussion here.

When families think comfort care or hospice they usually think morphine. And morphine, along with its many synthetic family members is an incredibly valuable tool in our arsenal. But it is not the only one.

Starting with a couple of personal stories to illustrate what can constitute comfort care.

Sam Katzoff, NASA scientist, in 2010 (~100 years old) NOT my dad!

My practice in hospice always included oxygen for my patients, it was understood as a comfort measure that does not prolong suffering and while it may not be effective at maintaining normal plasma oxygen levels, it has a strong psychological impact on the patient as well as the family. What we did get rid of was the pulse oximeter. This falls under the overall heading of not testing where you will not be doing an intervention.

Fast forward to a couple of years ago when we were in process of moving my father and mother in with us at a much lower altitude because his COPD was exacerbated by where they lived. Two weeks before the move he wound up hospitalized with dehydration which was treated with IV fluids and sent him into congestive heart failure. This is a really common issue with the very elderly and why I always warned my end stage patients against going to the ER – dying kidneys just cannot process that amount of fluid – which is a different story! In any case he wound up in renal failure and was not responding to attempts remove the excess fluids with diuretics. Considering his age (91), his cardiac history and his COPD it was decided that he should go home on hospice. I agreed and we had them hold him in the hospital for the couple of days it would take to get him there. When he arrived home we were there, and the hospice nurse from the local agency arrived soon after. She stopped at his bedside and then joined us in the kitchen. The first thing she mentioned was that she had turned off his oxygen.  This did not go well. Like most folks with COPD, he was extremely dependent upon his oxygen both physically and psychologically. My mother, who suffers from early dementia, was also very tuned into his oxygen. And the fact is that despite everything, I held onto the hope that the final dose of diuretics he got in the hospital would work and he would pull out of this as he had done in the past. Hospice nurses are no more immune from magical thinking and denial than anyone else!  The nurse stated that keeping on his oxygen would just prolong his suffering.  After I explained my reasons for disagreement his oxygen went back on.  He was not in much pain at all, the morphine helped to ensure he was not suffering from shortness of breath (yet another post!), and of course the diuretics did not miraculously start to work. He died peacefully at home a couple of days later.  The oxygen was from a concentrator so the cost was negligible, and the comfort provided to my dad and the family was significant even if not measurable. This very closely reflects my experiences as a nurse with other COPD, Lung Cancer, and heart failure patients.

MY cat Vega in her younger days. In a box.

Next up for discussion in comfort care is fluids. When a person is no longer able to drink for whatever reason, the question of fluids arises. Families are generally pretty horrified by the thought of a loved one dying of thirst, much as they worry about them dying of hunger. All our evidence, including what our patients tell us, is that neither sensation is an issue for them.  And as I illustrated in my previous story, IV fluids tend to overload people at the end of life and lead to fluid overload in the lungs, heart and extremities. There has been discussion in the literature for some time about the value of something called clysis, or hypodermaclysis, where large amounts of fluid are injected under the skin, to be absorbed more slowly by the body. This is a practice that has been common in veterinary medicine for some time. It is not something I saw in hospice, and I am starting to believe that might need to change.

Now we get to Vega, the sweet face just up there in the box. She is 15 and suddenly dropped about half her body weight, which I suspected meant kidney failure. The veterinarian confirmed this and prescribed subcutaneous fluids and anti-emetics for comfort. I have been giving her 100ml of ringers lactate solution under the skin every evening. She tolerates the process very well, and has maintained her appetite with the help of the medication. Based on past experiences with end stage renal failure in cats, she is more comfortable and is surviving longer on the current regimen with no negative effects. This is causing me to question whether this might not be something we should consider much more often in end of life care. Also a very low cost intervention.

Now I move to things that are absolutely comfort care, palliative treatments and are also budget busters. How hospices handle the need for these treatments will probably vary and I am not familiar enough with current hospice billing to address that aspect. But they need to be pointed out.

Palliative radiation treatment for bone pain. While steroids and NSAIDS are helpful tools for bone pain, radiation can be the most effective treatment for bone pain caused by malignant neoplasms. It also is effective in preventing spinal compression complications from bone cancer in the spine.  Palliative radiation is also used to shrink inoperable tumors for comfort.  

Ascites is the accumulation of fluid in the abdomen seen very often in liver failure, but can also be a result of other disease processes. When the fluid accumulation becomes large enough it causes quite a bit of discomfort and paracentesis is often ordered to drain the fluids and relieve the pain and pressure. In the past, this almost always required that the patient go to a clinic and have the procedure done, and very frequently meant discharge from hospice (these are in my experience in the past and may not reflect practices elsewhere).  As the disease progresses, having to go ‘get tapped’ and have fluid drained increases in frequency and amount of fluid. The constant buildup and then removal can also have side effects for the patient as their bodies and blood pressure adjust to the changes.  Having had a patient with a drain for malignant pleural effusion at home, the ability to have a drain placed for ascites as well as effusions would be great for palliative care.

Blood transfusions for comfort is less well documented and probably more controversial. My experience with it was primarily in a setting of providing end of life care in a non-hospice clinical environment. My patients were oncology patients and hepatic failure patients who received transfusions for fatigue and weakness. There was definite pushback for my hepatic failure patients whose disease was alcohol related. (This was exacerbated by their status as members of minority groups, as this amount of resistance to transfusion was not noted in my non-minority patients. This is, of course, anecdotal…)  There is good evidence for the use of transfusions in patients with solid tumor cancers. Again, since this would be an inpatient procedure it would not be available for home hospice.

I would like to see the philosophy of hospice used less often to justify cost savings. And I, as a nurse, would appreciate having the respect of my medical directors demonstrated by honest rationales for policies, rather than unsubstantiated anecdotes intended to pacify patients and families.

Deciding on a care plan for death – yours or someone else’s.

Watching a recent interview with the filmmakers of the film “End Game” I was struck by a question from the interviewer. His question suggested to me a belief that still seems to exist here in the US about what a ‘normal’ or typical death would look like. The idea seems to be that dying in the hospital is still the default, with any other scenario being less common. This is not the truth in the modern world. Most folks die as the result of progressive illness or disease including the progressive global decline associated with old age. Since there is typically no medical intervention that is necessary to manage these diseases that requires ongoing hospitaliztion, care happens either in a facility or at home. The actual death most frequently happens in that setting as well. Should the person have chosen not to have a Do Not Resuscitate order, then they may be sent to the ER when death is imminent at which point the doctors and family would discuss appropriate care versus futile interventions. It is not uncommon for a patient to be discharged home with a DNR order even at that point. Hospital beds are intended for people requiring active interventions and medical support, and taking up a bed for a death has more disadvantages than advantages for the hospital. Some families understand this, and some do not – but ultimately medical care in this country is driven by reimbursement.

The sky is the most vibrant as the sun is setting.

So if the plan will not be to die in a hospital bed, where then?

Care facilities of various kinds are a frequent choice. What type of facility and which will be determined by the level of care needed and the source of payment. Care level will range from Assisted Living where a person is independent but with assistance for things like meals and medications, up to a skilled nursing facility where nursing care is provided for things like wound care and IV medications. Most folks will fall somewhere in between as their needs increase and will require what is often referred to as custodial care. Essentially all the tasks of daily living like feeding, bathing, dressing, etc are provided but no skilled nursing interventions are required and medications can be taken orally. Memory care units, which have controlled access and exit are generally considered to be assisted living although they do provide more supervision than a typical assisted living facility. Some hospices provide dedicated hospice facilities for patients at end of life. These are often built for purpose with larger rooms and accommodation for families to stay with the patient as well as a very homelike environment.

Pricing for all the above is going to vary a lot, and payment options will vary as well depending upon the location and the specific circumstances of the patient and family. That was covered in more detail previously.

Home

Finally, the option to go ‘home’ – whether that is the patient’s home or that of a family member. Care at home will be provided by family or by caregivers hired by the family. Assistance with medical needs can be provided either by home health or home hospice services, both of which will mean intermittent nursing visits as well as potentially having a bath aide to assist with bathing and a social worker to assist with resource identification and care planning. Both are covered by Medicare under different guidelines. The advantages to having hospice care, especially earlier in the process is the benefits provided by the team and the benefit including all equipment and medications related to the diagnosis delivered to the home in most cases. Having a team coordinating care can be a huge help to family caregivers. The best reason not to choose the hospice benefit would be if there were still medical interventions that are being done for comfort – examples would be palliative radiation treatments for bone metastasis, palliative blood transfusions and abdominal fluid taps to control ascites. Finding an agency that offers palliative care as well as hospice care would be ideal in that circumstance, but more commonly just finding a home hospice agency that also does home health care can be helpful in transitioning easily.

The biggest thing to keep in mind is that none of this is written in stone. You are not locked into any of these choices and changing your mind is simply a matter of logistics and paperwork. In some cases, a patient in the hospital can be ‘moved’ to inpatient hospice status simply via paperwork and never have to change beds.

It really boils down to talking with your family, physician and care team to help decide what option works best for you.

That’s not how it should work, death edition

In today’s post, I am going to take on yet another beloved cultural icon and heap scorn upon it. Since we are rapidly approaching the end of 2018 and preparing to greet a new year it seems a good time to address…


The Bucket List – and its many subgroups that involve all the great stuff you are going to do when you find out you are going to die.

Being alive is really awesome, just can’t say enough good things about it most days. Not all days, but most. Being dead, I can’t comment upon yet. But I certainly won’t be able to share my opinion when the time comes so that definitely gives it a downgrade in my book.

Having a list of stuff that excites you, stuff you want to do, stuff that you aspire to is a great thing. What annoys me is linking it to death, and even worse when we see it so often depicted as the last acts of someone who has been given a terminal diagnosis. You have seen the movies – curmudgeon who was a miserable sod their entire life discovers the true joys of being alive after they have been told they will die soon.

Or our cultural vision of life – grow up, get a job, work hard, sacrifice and save, and then retire and enjoy your life at the end of it.

Working in hospice, I found it pretty easy to get whatever I needed for my patients whether it was equipment, financial assistance, a food basket, or drugs to control their pain simply by mentioning that they were dying. Being terminally ill is the lottery you win in our culture. You get a specialized medical team that includes a chaplain and social worker, you get whatever meds you need to keep you comfortable no questions asked, we bring you a specialized bed, find you housing, and track down long lost family members.

I had an older man who had led a life spent on the margins of society. After his terminal diagnosis, the daughter he had abandoned as a child was located and she agreed to take him into her home. He had a hospice team including a bath aid, nurse, social worker and chaplain seeing to his needs. One day he pulled me aside and suspiciously asked if he had won the lottery or something. He had spent his life being invisible to everyone who wasn’t having him arrested, and now suddenly all these people were acting like he was some sort of celebrity. He was literally looking for cameras. All he had to do was get a less than 6 month prognosis. I have also had more than one patient who had struggled with chronic pain for decades burst into tears of gratitude when they finally got a terminal diagnosis because they would finally get their pain controlled. How fucked up is that?

A lot of folks have a list of all the stuff they would do if the doctor told them they were dying tomorrow. But it really doesn’t work like that. You ARE going to die. Guaranteed. But not like the movies.

How it really works:

You get a diagnosis. Maybe it is cancer, maybe heart or lung disease, maybe an autoimmune or progressive nervous system disease. When you get the diagnosis it is nearly always early enough to start some sort of treatments.  So you have surgery, or start medications, or get radiation, or go on oxygen, or get chemotherapy. You and your medical team are working to either cure you or to control your disease. You talk about remission, lots of statistics get thrown around. You hear about odds and recurrence and 5 year survival rates.

Your disease progresses. Treatment works for a while maybe, but eventually it doesn’t. Or it never works at all. Or it works perfectly but something else crops up as a result of the underlying disease or the treatment itself. In any case you are not getting better. Discussions on what the next step should be – is there a next step at all? Your overall health is assessed and your ability to tolerate potential treatments may be discussed. If your health is otherwise good, more aggressive or experimental treatments may be offered as an option. If your overall health is bad, it may be suggested such treatments could be lethal faster than just letting the disease take its course.

Your doctor -hopefully- tells you that there are no more curative options left and palliative treatment is what can be offered at this point.  A terminal diagnosis and eligibility for the Medicare hospice benefit is a prognosis of less than 6 months expected life. Sadly, the reality is that by the time folks are referred to hospice the time tends to be closer to two months of services.

So this is the point in the movies where your life REALLY starts. You have been through grueling treatments, illness ravages your body, the drugs you take to control your pain and symptoms mean you have drugs you have to take to control the side effects of those drugs. You are exhausted most of the time. But hey, you still have a vacation to the south of France on that bucket list, right? Zip line in the rain forest? Hike to the bottom of the Grand Canyon?  Swim in the Caribbean, visit the Taj Mahal…

There is a damn good reason why Make A Wish takes kids who just have a life limiting diagnosis. Some of them even get better. Because if you wait too long there is no energy or joy left for all that stuff on  that list. Too many people put off living so long they miss out completely. Realistically, odds are good when you finally get that terminal diagnosis it is not going to look one damn thing like a movie. You are going to be exhausted, sick, and not feel like doing anything.

So get up off your ass, stop waiting to live, and go do the damn thing now. Today. Worst case scenario you live a long, happy life and did the thing now instead of later. Hell, maybe you will even have time to do things you don’t even know you want yet. You are alive now. Act like it.

Death will come. Be ready to welcome it and greet it with gratitude. In a body that truly LIVED.

 

That’s not how it works – Death edition

 

In today’s economy there are things you hear quite a bit from people just struggling to pay the bills and keep a roof over their heads.

“I can’t save for retirement – I will just have to work until I drop dead”

“When I get so old I can’t take care of myself anymore I just want to die and not be a bother to anyone”

“When I can’t wipe my ass anymore just pull the plug”

That’s not how it works.

The chances are very, very good that at some point – often sooner than you expect – you are going to get sick and not be able to work. Not sick enough to die – just too sick to work. Modern medicine, vaccinations, diet, sanitation mean that we live to be a lot older. Which also means more time between being able to support and care for ourselves and the actual shutdown of our bodies. We don’t get to just ‘decide’ to die – short of actual suicide – our bodies are designed to keep ticking away even when everything has gone straight to hell. They are really very well designed machines with multiple fail-over systems and redundancies.

#1 complaint of hospice patients who are actually IN the dying process is that it takes so darn long to die. And there is almost never a plug.

Fact is that just like when you came into the world, before you leave it someone is going to have to wipe your ass. So be kind.

Chronic Pain vs the Opioid Crisis

Lots of stuff in the news about the very real problem with opioids being diverted into the community and about them being prescribed irresponsibly in the first place. Doctors feel under attack, patients feel under attack, parents and those who have lost loved ones to opioid addiction feel that they are finally being heard. My problem is that this keeps being presented as a zero sum game.

Chronic pain is a huge problem, that continues to grow simply by virtue of improved medicine. What doesn’t kill you is something you live a lot longer having to manage. We are also doing many, many things that our still evolving primate bodies simply were not designed to do – with damage being a result. Autoimmune disease is on the rise, for unknown causes. It all adds up to lots of people who are debilitated with pain, but who are not going to die from it anytime soon.

St Erasmus – There is actually a saint of abdominal pain!

Doctors do not get adequate training on pain. I can say that with authority because I DO have training on pain. And because pain control is so fraught right now for providers, the result becomes a game of hot potato with the patient being bounced from specialist to specialist with no relief.

Early Chinese Exercise for lumbar pain – Lizhan huo ren xin(Standing practice to enliven one’s heart)

I have thought about this issue a lot over the years, and I think I have come up with a solution that could address both the huge problem of untreated pain in this country – which also feeds the huge problem with opioid abuse.

My background is in Hospice and Palliative Care. So pain and symptom control. I know about treating pain. The difference between pain control for a patient who has a less than 6 month prognosis and a patient with chronic pain is time. For hospice patients, long term side effects and issues are not a concern. They also require frequent monitoring and adjustment of dosages as their pain increases or needs change. With chronic pain you DO need to worry about long term effects and side effects. But you also have the luxury of a much longer time to trial different plans and medications and less expectation of rapidly increasing severity. Otherwise the goals and treatments should be identical.

The Improved Allie Brosh Pain Scale

My job as a hospice nurse was to ensure that my patient had adequate pain control. This involved a detailed pain assessment as well as an understanding of their disease process and the most likely etiology of their pain as well as the type. Once that was established, I discussed their goals for pain control, discussed the best initial medications for them – usually a long acting baseline med, a short acting breakthrough med and often adjuvant medications to potentiate or bolster the existing meds and often allow a lower dosage of opioids overall if they were being used. This plan was then discussed with the physician and pharmacist, the drugs were delivered, and the medications were begun. This was not the end of the process – it was the beginning.

Morphine molecule

Regular nursing visits to assess the effectiveness of the regimen came next. Dosages were adjusted at each visit. Pill counts are done to assess what is being used. Patient physical assessment is done at each visit, as well as ongoing discussion with the patient. It is often early in these visits that a patient or family member will advise you of a problem with someone diverting drugs, or potentially diverting drugs. Some patients are known to be problematic for diversion by themselves or others. This does NOT mean they don’t get pain control!! It means that rather than giving someone a big bottle of pills that are actually spendable like cash for goods and services in some communities, we have to be more creative in pain control. I have used fentanyl transdermal patches as one method. Delivered every three days

Infusion cassette for infusion pump.

and administered by the nurse. I have used IV narcotics delivered via a mechanical pump with a password lockout so the patient cannot change the dosage. I have used a simple lockbox in the custody of a trusted family member who is in charge of administering the drugs and willing to take responsibility. The goal here is that the patient has the pain control they need, but I and possibly the caregiver are both taking responsibility to do our best to keep those meds out of the community.

That is enlightened self interest. We ensure that we remain trustworthy for physicians to feel confident entrusting both the care of their patients and their prescriptive powers on our word. So registered nursing visits throughout the entire course of the medication regimen, with the goal of ensuring that our patient is getting the pain control needed, and the responsibility of keeping those meds out of circulation. And when our job is done, when the pain is no longer an issue, our final job is to dispose of all leftover medications, with a witness, in a method that keeps it out of the community and out of the water. The ONLY thing keeping this completely sane and rational approach from being available to those who require palliative care rather than only those who are dying is funding. There is no medicare program that pays for the services. We are willing to spend billions on yet another ‘War’ on opioids – which are actually really amazing tools for treating pain when used appropriately – rather than spending that money on ensuring that those who suffer are the ones getting the medications. Doctors would LOVE this, seriously. (If you are a physician and would not love this please feel free to comment!)

If I were designing a program for chronic pain, it would involve an initial referral from a physician to a Palliative Care home health nurse for an assessment and admission if appropriate. Initial visits weekly to assess pain and response. Moving to biweekly after two months, and monthly after 6 months. Other visits prn. Like hospice it would also include home health aide assistance as needed, social worker, PT and OT. Respite for caregivers included if we could get it past the bean counters.

When someone you care for wants to die now

I have been trying to do a sort of linear structure with my blogging here, starting with early preparations and working my way through end of life care. But issues come up and catch my notice that I want to address while they are fresh. This is one of them. From a linear perspective, this can come up at any time, really. No matter what your background or perspective is on suicide, having someone ask for your assistance or express a desire to kill themselves needs to be the start of a very focused and respectful discussion right now.

I will share a really good interview that brought this to mind. Please either listen or read the transcript.   https://www.geripal.org/2018/04/Is-Suicide-Ever-Rational.html This is discussing otherwise healthy elders expressing a desire to end their lives, and how a geriatric psychiatrist deals with it and her thoughts on it.

In my practice, suicide was nearly always rational, but it was not legal and is officially NOT a part of hospice care. The mantra is that hospice neither speeds death nor delays it. Of course I still have fielded many, many requests from patients to help them end their lives.

The first person to ever ask me was not a patient, she was my friend and I was her caregiver. I was married to her son, and I was not yet a nurse. She was dying of cancer, and asked me one day to help her commit suicide. I have always been a proponent of a person’s right to choose, including the right to choose to die. But having your mother-in-law ask for your help in killing herself is definitely having your bluff called. Of course this lady was also having intermittent psychotic episodes when she was terrified because she thought people (including us) were trying to kill her. My response to her was that this was NOT my place. She needed to talk to her boys about this, not to me. Because while she would be gone, my husband would be having to wake up every morning with the woman who killed his mom. It felt unfair of her to ask me. So that was my first out! She died naturally with no help from any of us.

Later after becoming a hospice nurse, I frequently would get a patient asking me “can you please just get this over with?”, or some other variation on asking me to assist them in speeding their death. What I discovered was to use this as the start of a conversation about what their quality of life was like and WHY they felt death sooner was better. None of them wanted to die, but they were in distress. In some cases the distress was undertreated pain or other physical symptoms. More often the distress was psychological or spiritual distress – feeling helpless, feeling like a burden, the cumulative grief of the constant losses and indignities of a dying body. This is harder than adding a medication or shifting some pillows. But addressing these things is really important. The biggest issue is the complete loss of control, over pretty much everything including your body. Choosing when your life ends feels like taking back a bit of that control.

Talking with folks about their losses, getting some help for their grief, and also addressing the feeling of being a burden. Reminding patients that we all start our lives helpless and require care and assistance in everything – and if they were parents then they did that for their kids. If not, someone did that for them. It is how it works, and the act of caring is a gift that we give to others – they become people who take care of others, and that is integrated into their sense of self. If there are grandkids in the home, they are helping teach them how we take care of others so that they can someday do the same. And that ultimately they are teaching those around them how to die. And that is a big responsibility, because it helps determine how they will face it when their own time comes.

Side story on assisted suicide. Was called to see a patient who was referred by their doctor.  Gentleman was NOT happy to see me. He was very solidly in the death denying camp, and had lost his wife the year previously and had not yet dealt with her death. His was going to be somewhat drawn out with a gradual loss of strength and the ability to continue to live alone and care for himself. In the course of our initial interview he made it clear he found home visits an unwelcome reminder of his illness and wanted to see me as little as possible. I agreed that as long as he let me in once every two weeks he was welcome to forget I existed in between. Then, towards the end of the meeting, he mentioned that he intended to take his own life at some point when he could no longer live alone. He was watching me closely when he said this (I discovered later he had brought it up previously with others who apparently flunked the test). So I asked him what his plan was. He said he had done a lot of research and described his plan to me. It was a good plan – not foolproof, but very likely to do the trick. So I told him so. Then I asked him a question. I asked him if I could come back with an even better plan, would he give me time to find out if it was possible? He agreed.

My plan was something I had just read about a week previously, called terminal sedation (or palliative sedation). This has been used for patients whose pain or suffering was not responding to any medications and involves essentially anesthetizing them. They sleep in a drugged coma and pass away while still asleep. Because the death is caused by the patient being unable to eat or drink, it has skated the line of assisted suicide. And at the time I was working for a faith-based medical system. And my patient’s suffering was not physical, it was a psychological unwillingness to go through the dying process. I will add here that this person had no other family so that was not an issue.

I went to the ethics committee and asked if they would consider offering terminal sedation to my patient, as an alternative to him taking his own life at home. And they actually agreed! So I went back to my gentleman and described the process and how we would carry it out and he agreed to my plan. He would go into our hospice facility when he could no longer stay at home, and would tell the doctor when he was ready to be hooked  up to the machine that would put him to sleep. And when the day finally came, we moved him into his room and got him settled and we visited a bit in the garden. I went back and saw him a couple of times after that over the next few weeks, just checking in as came through. I got a call from the facility when he finally died. He never did ask for that pump. Just knowing that he was in control of the process was all he really needed.

Experiences like this have colored my view on all of this. I think it is important when someone says they want to die that we center ourselves first, and then try to find out why. Because for elders like the podcast above is describing, it is far more than fear of a nursing home – or as one of my patients called hers “God’s waiting room”. It is all the cumulative griefs and losses that pile up, the loss of bodily autonomy that is ongoing, and the real concern of becoming a burden to their loved ones. Folks need to feel useful, no matter how old or bunged up.

I now live in a state where physician assisted suicide is legal, and I strongly support it – because I think having the right to take control over your own death is important. But I think it is also important to be sure that we are having these conversations, and that we have some good viable alternatives for someone who doesn’t want to die, they just want the suffering to stop.

 

More care planning – how to get stuff paid for (or not)

A big area of confusion – and made so by design – is how and what is paid for by whom when it comes to needed care and assistance.

Most folks of a certain age believe that there are federal or state programs that will take care of their needs as their health declines, and that this is taxpayer paid. Primarily because that is what they have been told by politicians for years. And for the most part, it is completely false. So I am going to break down what is out there (in the US) federally. And what is covered by states I am familiar with – obviously YMMV. Some states offer more, and far too many offer less.

Medicare is the federal program that provides medical (and only medical) care to those who are either over 65 years of age or who are disabled. For disability qualification you have to have been eligible for Social Security Disability for two years or have end-stage renal disease. Medicare has no income eligibility, anyone who qualifies can receive it.

Medicare has various programs that cover hospitalization (A), medical (B), private “Advantage” programs (C), and prescription drugs (D). As can be expected these are not straightforward, so doing your homework or getting help in deciding on specific coverage is essential. The big issue I want to note here is that this is MEDICAL ONLY.

This is important because while a stay in a nursing home can be covered by medicare if the patient needs ‘skilled nursing care’ – it will not cover care for someone who simply requires assistance with personal care, feeding, taking medications, etc. – this is known as ‘custodial care’.  It is a common misconception that this is covered and it is not. There are quite a few agencies who can supply caregivers to provide either round-the-clock or intermittent custodial care, as well as homemaker services. These can count towards the ‘spend down’ discussed further in.

Medicare also pays for the hospice benefit. Other insurances may also offer hospice coverage that will vary depending on the plan. Medicare hospice coverage is a specifically structured program that provides for medication and support for a qualified medicare recipient who has part A coverage. The patient must have a medical diagnosis with a less than 6 month prognosis and meet the requirements of that particular diagnosis as determined by their regional CMS (don’t ask, complicated bureaucratic BS). That benefit covers nursing visits at home, visit from an aide for bathing care, social worker, volunteer coordinator, chaplain and various other therapists as approved. It also covers durable medical equipment (such as a hospital bed, bedside commodes, lifts, wheelchairs, medication pumps, etc) as well as medications related to the terminal diagnosis. Note that the hospice benefit is in addition to the regular medicare benefit – it covers everything related to the terminal diagnosis only, but regular medicare will cover other stuff. So if you have a heart condition but are on hospice care for cancer, your cardiology care is still going to be covered by your regular medicare.

Once again however – this is NOT around the clock care. There is no caregiver who comes to ‘take care’ of the patient at home. The visiting nurse performs the same function as the physician would perform if you went to their office (although we don’t tend to hang onto the door handle and start to look anxious after 15 min!). The bath aids come in and can bathe, change sheets, and help out with the patient but their visits are time limited as well. There MUST be a caregiver at home to give care to the patient if they are unable to do self care, and a plan must be in place for care when they can’t. Hospice care can continue even if the patient is in an assisted living or convalescent home. It can even be provided in a nursing home in many places. While part of the benefit that is required to be covered includes ‘inpatient’ care if needed and respite care, the reality of what that entails and if it is available at all varies dramatically. Everyone is required to state they offer it, but my experience has been that if you think you would need that then look for a larger, well funded (as in lots of private donations), or non-profit medical center affiliated hospice. Because realistically hospices that just get their money from medicare reimbursement cannot afford to offer those services.  Again, this is the reality I have observed as a nurse and as a family member and referral source for friends.

Okay – so the next thing is Medicaid, or whatever your state’s version of low-income coverage is called. Medicaid is federally funded, but state administered and is based on income eligibility. It covers different stuff than Medicare, and can pay for the ‘custodial care’ that Medicare does not cover. It has strict income limits, and for most folks if you qualify for Social Security Disability you will have too much income to qualify for Medicaid – but ymmv! Typically for a senior on Medicare who needs custodial care, they will have to go through a period called a “spend down” before they can get Medicare coverage for residential care. This involves selling assets and spending all money down to a point where your total asset value is below a set (very low) limit. It is EXTREMELY important to know that giving gifts is NOT an approved way to spend this money, and signing over assets to family members or others means that there is a five year wait before those gifts are no longer counted against your income. If this may apply to you, your best bet is to contact an attorney to consult about care planning for the state you will be living in and to review your best options. Just keep that 5 year timeframe in mind if you even suspect you might need Medicare at some point!

Since state benefits vary dramatically on what is covered by Medicaid, your best bet is to look up the website for your state and see what programs are included. These programs typically cover medical care for folks who have not yet qualified for Medicare coverage, medical coverage for kids from low income homes, and medical care for low-income pregnant persons. Again, these programs can vary widely from state to state.

Some states even have either Medicaid or other programs that could offer some in-home assistance. Some state Medicaid will allow a family caregiver to be paid for their services, while other states will only pay for non-family caregivers. You can also check with churches, your tribe, state senior or disabled assistance agencies, and private agencies like the American Cancer Society or the Alzheimers Association for lists of local resources. The big message here is that overall, there is NO universal or consistent coverage to care for someone either at home or in a care facility simply because they need it. My mantra has been, sadly “Yeah, nobody pays for that.” So when doing care planning it is really important to realize that someone(s) is going to have to be the caregiver. That could be someone(s) you hire, or family member(s) or friend(s).

Social Security – Social Security provides an income for those over age 67 for my age group, for those who qualify due to disability, and for qualifying surviving spouses and children of a deceased taxpayer. This is a not insurance coverage, it is income. If you are disabled and applying for Social Security disability the best advice I can give you as a veteran of that particular system (as a disabled person) is to get a lawyer sooner rather than later. It is a messed up system that is NOT designed to work for you no matter how compliant you are in jumping through the hoops. Again, IANAL and YMMV.

Further I am going to post a quick bit of advice from me as both a caregiver and ‘beneficiary’ of some other systems you may encounter – I will preload this by saying this represents my experiences and those of others who have shared their experiences and reflects my conversations with a lawyer regarding my specific case. I share this stuff because it is my belief that my experiences are very likely representative of the general population rather than exceptional. But again  – not a lawyer and you may have completely different experiences, please consult with an attorney for specific advice.

Other insurance – short-term and long-term disability. These coverages are sold commercially, as well as often being offered as add-ons to your employment benefits package. You pay a premium per check for coverage that will reimburse you for lost wages should you have a health issue. Short-term disability is intended to cover stuff that might take you out of your job for a recovery period – surgery, for instance. It kicks in after a specified waiting period and will generally cover some percentage of your salary. You must apply for this and have your claim approved, like any other insurance. In my experience this tends to be pretty straightforward and generally does what it says on the tin.  Long term disability is another kettle of fish entirely. Long term disability is for when the time limit is reached on your short-term disability. So if you are not recovering and will need to be out of your job past that time frame, you will have to place a claim to be approved for the long-term income replacement benefit. This also applies if you are permanently disabled and will not be returning to work (again, check your policy to see EXACTLY what the terms are). Good luck with that. Long term disability is much, much better at collecting premiums than they are at paying claims. And even being approved for Social Security Disability does not make any difference on the approval or denial of your LTD claim.

Think about that one. There have been a LOT of loopholes carefully drilled in the laws and regulations covering long-term disability, and for far, far too many people that means that their belief that they were paying for security and taking responsibility so they could pay bills no matter what has met the cold, hard reality of corporate profit-seeking. Your claim will come back denied based on the medical report of someone you have never heard of or seen who is employed by the insurance company to go over all your medical records and find any reason whatsoever to deny the claim, even early misdiagnoses that are later corrected. And the way the game is played is that each claim you make will be held out for the full legal length of time allowed to respond, with as many extensions as they can add before each denial that you have to contest. So typically a claim can take several years from initiation to the final denial. Of course the goal is that you will die or give up. Maybe get your SSDI and drop it. After the final denial your only option is to hire a lawyer to pursue it, and there are plenty of groups that do nothing but pursue these. But be aware that those loopholes I mentioned could also mean that you are told that while you are undeniably and clearly disabled you do not have a winnable case against the insurance company. If I were ever in a position to be offered LTD again, or when it comes up for friends and family, it seems to me (not a lawyer or financial planner) that you would be better off saving that money in some sort of income-producing fund that you KNOW you could access in case of emergency rather than giving money to an insurer (whose profit incentive is to deny your claim) that you may very well never see again.

To wrap up, it is important to know when you are planning for needs and care what resources are available. Ensure that any benefits – whether those above or other benefits such as veterans or employer benefits – have been accessed, and research on locally available resources can also help ensure that you have what is needed for care whether at home or in a facility.

 

POLST and DNR

While a living will or advanced directive is a document that expresses your wishes for medical care, it is NOT a medical order. It may include (and should include) a designation of a medical power of attorney who can make decisions for you – but it still requires a physicians order to carry those decisions out.

This does not generally become an issue until you have a medical condition that will require physicians orders, such as a Do Not Resuscitate order. While you can express a wish not to be resuscitated, in most states emergency responders are required to begin resuscitation in the absence of a physician’s order. This is simply because their licensure and the law determines that they do not have the breadth of medical knowledge and experience to determine if resuscitation is appropriate outside of very specific circumstances (such as not being required to do chest compressions if decomposition is advanced or the head is missing). The paramedics are not any happier about having to do this stuff on a dying patient than you are, so if it happens please don’t yell at them. They don’t have a choice.

How to avoid this: In some states including here in Oregon you can request a Physician Orders for Life-Sustaining Treatment (POLST)  if you qualify, which can work in conjunction with your advanced directives

Here is the California form, with something VERY important that relates to my last post

https://www.geripal.org/2014/09/Changes-in-California-POLST-forms.html

Note on that third page, the image shown is a physician’s order – which takes the onus of discontinuing an intervention off of the family!

Before POLST was available, and in places where it has not been implemented we have the DNR order. Both of these are medical orders from a physician, and require that the patient involved meet criteria for illness, age or end of life status.

With these orders, frequently a copy will be sent to emergency services and it will be requested that you keep a copy on hand in case a response is ever sent. Some folks hang it on the fridge or on a door or wall, others keep them in the freezer or in a file. Having quick access in an emergency situation is important. Sometimes a visitor or family member will panic and call, sometimes in a move to another place an order doesn’t get moved with the patient with very sad results.

 

Discussing Advanced Directives

Mr and Mrs Lee have been married for 62 years. They have two adult children, and have been in fairly good health. Mrs. Lee is 84 and  has some osteoporosis and arthritis. Mr Lee is 87 and has had high blood pressure for some years and has a history of heart disease that has been treated with medication and diet. Mr Lee recently had an episode of congestive heart failure after going out to dinner and getting too much sodium. He is in the hospital and both children have arrived to assist with care planning for their parents.

The doctors and social workers sit down with Mr Lee and his children to discuss advanced directives, which neither parent have ever had. It is explained that while states may have some variation in how they are written and executed, what an advanced directive does is provide direction to your care team on your wishes as well as designating who you wish to speak on your behalf if you cannot. Advanced directives are very helpful to your designated decision maker as well, since they specify what YOUR wishes are and assist them in making those decisions.  The scope of the advanced directive (or ‘Living Will’) is to specify what potentially life extending measures you would wish should you be unable to speak for yourself. Common instances would be a stroke that renders you unable to communicate and swallow, or to breathe unassisted.

There are specific measures that you will find in these documents.

Artificial feeding  – which can include a tube (link is video that may be TMI) through the nose and into the stomach, a tube directly into the stomach or small intestine, or nutrition given through an IV line.

Artificial hydration – which generally means IV fluids if used alone, but fluids are also part of the nasal or gastric feedings if those are chosen. Another, less common method of treating moderate dehydration  is hypodermoclysis – fluid is inserted under the skin (subcutaneously) where it can be slowly absorbed by the body. This is also used palliatively since it can be easier to accomplish in a home situation where the patient does not have an IV line.

Mechanical assistance to breathe – Intubation is the process of placing a breathing tube to keep your airway open. Ventilation is the process of forcing air through that tube under pressure to breathe for you, and a respirator is the machine that is used to do this. For long term, a tracheotomy is usually performed so the respirator can be connected at the neck, freeing up the mouth and throat.

Your advanced directive may also specify things like kidney dialysis, where your body is hooked up to a dialysis machine and your blood is run through the machine to filter out all the toxins and restore the balances that your kidneys normally perform.

Cardiopulmonary Resuscitation (CPR) – This ranges from the CPR you see done in the field with a person doing chest compressions and breaths for someone whose heart has stopped, to the use of an AED (Automatic External Defibrillator), up to a full medical cardiac resuscitation with a crash cart, hospital defibrillation, and drugs.

All the above measures are intended to prolong life or delay death – BUT – they are all supportive measures, not a magical ‘machine’ that can keep one alive indefinitely. This is a very common misconception that I have encountered that is, sadly, often spread further by popular media. The idea that if we keep pumping food, fluids and oxygen into someone they won’t die. I invite folks to think about how many 300 year old people with feeding tubes and oxygen they see! What these machines are VERY good for is supporting someone with a catastrophic illness or injury, allowing them to naturally heal and resume the functions that the machines are currently doing. Examples would be things like Hantavirus infection, insect borne viral infections like West Nile, and injuries or illnesses that cause temporary swelling in the brain. In all these cases, the goal of treatment is to support the person until they can return to health and no longer need the machines.

This brings me to a question that I feel needs to be addressed in these sorts of care conferences but often is not. Frequently because it is uncomfortable, especially if the patient is part of the conversation. That question is “What are we saving them FOR?” What is our purpose in prolonging their life, and what is the expected outcome if we do so? For a long time prolonging life has been the default, mainly for religious or cultural reasons. And when we lacked the technology to take it to the current extremes, it was not as often a problem. But today, we can artificially delay the death of a person with both terminal and progressive degenerative diseases, while lacking the ability to stop or slow the progression of those same diseases. We can artificially feed and hydrate a patient with something like Alzheimers dementia and prolong their life literally for years, without any way to stop the progression and loss of personality of the person suffering from it. We can keep a cancer patient alive long enough for their terminal disease to spread to bones, brain and vital organs before death finally takes them. These are the things that need to be considered, but are really hard to talk about. We say “would you want someone to do CPR if your heart stops?” without sharing the outcomes of a patient with advanced cardiac disease who is in the hospital after a resuscitation (or is resuscitated while in the hospital). Since blood stops to the brain during cardiac arrest, hypoxic brain damage is also a common problem for those who DO survive.

Being respectful of the wishes of our patients and their families should include giving them the information they need to make informed decisions. Doing so without trying to influence those decisions is also a great challenge for us in medicine as well. We have concerns about ensuring that care is available to everyone who needs it, which means trying to ensure that those in ICU beds have the best chance of recovering. We are constantly under pressure from our administrators to guide patients to the most cost effective interventions for the medical system. And even though most of us spend our lives deflecting those pressures, we also struggle with the very real problem of having experience with all the really ugly outcomes of many of those interventions, but do not want to frighten patients or their families.

And this is also extremely important to me. Because I have witnessed those of us with good intentions doing horrific damage by trying to direct (or even coerce) patients and families into doing what we think is best.  While describing in horrific and graphic detail what a field resuscitation looks like in order to convince a family to request a DNR (Do Not Resuscitate) order may feel like a win, you are setting them up for nightmares later when a friend or family member is resuscitated – especially if it fails. ALWAYS remember that your responsibility is not just to this patient, it is also to the family. And the kind of horror that we can precipitate in an unthinking moment can and is passed down literally for generations. I have heard so many horror stories from families about things that happened to a grandparent, and they have very much informed how I practice. So when I explain to a family the issues with tube feedings (more on that later) I need to find a balance between explaining the risks while avoiding lurid descriptions.

The flip side of this problem is the issue I have encountered with patients who either had no advanced directives, or had advanced directives that were disregarded – convincing a patient or family to agree to an intervention they do not want as a ‘trial’ that they can always discontinue later. This is a BIG problem. It is always much easier to not do a thing when it comes to medical intervention than it is to stop doing the thing once it is done. Respecting wishes not to intubate is ‘letting them go’, discontinuing ventilation is ‘pulling the plug’. Think about that. This is not a passive discontinuation of a futile medical intervention, it becomes an  act by the family of ending the life of their loved one. I was party to a situation in a nursing home where a patient with a written order refusing artificial nutrition and hydration was convinced after a stroke to allow them, ‘just until you get better’. She subsequently had several more strokes and wound up back at the nursing home fully supported on tube feedings, unable to communicate or respond meaningfully to anyone. She was completely paralyzed and required full care, while her body was being kept alive by IVs and feeding tubes. This was what her advanced directives had been VERY SPECIFIC in calling out that she did not want, but it was done and she was not able to ask that it be stopped. While she had no family, several of her friends and the social workers requested a care conference and the decision was made to respect her stated wishes and discontinue the interventions with the assistance of hospice, and to keep her comfortable.

That should be the end of the story, but it was not. We found that the idea of stopping her tube feedings and IVs was really horrifying to a number of staff members. This felt VERY active to them, they felt it was taking a life – despite the fact that the life was being prolonged (until the next stroke or the one after that finally allowed her to die) against her express wishes. The staff felt they were being tasked with killing a patient, and that onus had been placed upon them by people who were not going to have to accept the consequences of reversing the ‘trial’ they were promoting. These are important considerations when we are discussing these interventions with families. Ultimately we will likely not be there when these issues arise, but those family members are the ones who will have to be taking the active role and live with the consequences of that action.

Finally, for the purposes of this page, there are absolutely legitimate and understandable reasons for a patient or their family to wish to delay death, if possible. There may be a particular date, anniversary, holiday or even that the patient wishes to be present for. Sometimes the family and/or patient may wish to ensure that the date of death does not fall on a particular holiday or significant date. There may be undone arrangements the person or family wishes to make. And sometimes, it is simply the idea of having some control over the process – whether that is in delaying death or determining the date and time of death themselves. There have been a few patients in my life whose desire to delay their death was purely driven by fear, and we try very hard to help them come to a place of acceptance and peace while they struggle.

Because ultimately death is not optional.

For the Lee family, all these considerations need to be part of the ongoing conversation, so that they have good information for making these tough decisions.

Next post: What is a POLST?