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?

Understanding your audience

Like many folks in professions that deal with death and emergencies, I am prone to gallows humor. When discussing starting this blog, I was reminded that sometimes my audience has a much more immediate and personal reaction to the subject at hand.

Which leads me to a story of a failure on my part that still bothers me today.

Photo by the Author

I was living and working in end of life care in Native Health in Alaska, helping to put together some protocols and resources in home care. We were doing a lot of education and teaching, and I was asked to do a presentation for the annual meeting of the Village Health Aides who were gathered.

Village Health Aides in Alaska villages are something special. They function as somewhere between a Medical Assistant in a doctor’s office, a Paramedic, a midwife, a pharmacy tech, plus whatever else is needed. These folks are often the sole medical trained people in a village, and are supported via telephone or computer to a doctor and RN in Anchorage. Some villages will actually have an NP or PA, but many have only the Health Aide covering it all.

Because more and more people from the villages were requesting to be allowed to go back home when they were told they were terminal, Aides were needing more help and information on caring for them at home.

I am very enthusiastic about what I do. I love being able to care for people at the end of life, and to help families do the very hard work of caring for folks at home. When I did the presentation to the gathered Aides, I provided a lot of information with great enthusiasm. I addressed them as fellow caregivers who were going to be going into homes and helping out families to care for a dying patient. I discussed what potential crises they should keep in mind that they might not want to share with families but should be aware of. My talk was not dissimilar to one I was giving to those we were training for Hospice Nurse Certification.

It was an unmitigated disaster.

The organizer informed me that they had multiple complaints and never wanted me to return. I had someone come up afterwards and tell me how traumatized everyone at the table she was sitting at had been.  I had screwed up completely. Why? Because I failed to understand who I was talking to . Yes – these folks are the medical providers in their villages. But more importantly, these are the mothers, sisters, children and relations of their patients. All the people they take care of are folks they have known their whole lives. What they needed was what I would offer for family members, and the reassurance of having someplace they could contact if they needed help. Not a deep dive into the various specifics of end stage disease processes. Because one of the differences between us as care providers and the caregivers themselves is that we get to go home. We can sit down on the sofa, scratch the dog, and decompress from our day – even if that day has involved attending multiple deaths, and patient visits.

All I  can do now is try to do better. What you will mostly find here is intended to be addressed to those who are caregivers. Although there will certainly be stuff that I think will benefit care providers as well!  And I will do my best to keep my enthusiasm for my subject within parameters of good taste. Mostly.

Hi, nice to meet you. Let’s talk about death.

I’m here to talk about death. Yours, mine, the deaths of people we know and love. The common experience that all of us are going to have (unless you are a Greenland Shark, in which case please keep the smug comments to yourself) sooner or later. We will talk about how to think about and plan for your own demise, and also offer help and advice in caring for loved ones who are dying. I want to cover the stuff I think it is important for you to know even though you don’t know it yet, the stuff that you think is important, and the stuff you may think is important that isn’t as important as you thought. Do I have a point of view? Oh HELL yes. I have so much POV that I need several semi-trailers just to store them in between rants. But the most important part of my job, and the job of any of us caring for others is that our POV is irrelevant most of the time because our role is to be supportive of the family and the patient. We need to understand our views and prejudices, our beliefs and fears – but that is so that we can recognize when they might be trying to assert themselves inappropriately. We are here to witness, to support, to share our knowledge and expertise in the mission of providing comfort and peace to the dying in their own terms. Of course this is my blog so what I am going to share is a LOT of my POV and opinions. I am going to do my very best to offer plenty of examples and quite a few of those will illustrate alternative views and unexpected or even undesired outcomes.
My goal is to post starting with an intro to the concepts and what they look like in the US (which is what I am familiar with), discussions of advanced directives, discussing care plans and talking a lot about common misconceptions regarding medicine and end of life care. Then advance into some specific discussions about what the end stage of various disease processes look like, what things we watch for in each case, and particular symptom management (in a general sense). General caregiving tips and things to watch for and recognize as the dying process progresses. The biggest thing you are going to see is weasel words. So. Many. Weasel. Words. Because YMMV does not even begin to cover it. I will also provide resources and links to help both before and after a death. I feel very strongly about my responsibility not just to my patients, but to families and loved ones. I have seen again and again how the experiences that folks have, especially traumatic ones, become a part of the fabric and lore of that family. Misunderstandings or bad experiences become the wisdom that families use to make decisions later on. So it is important to me to point out and explain things that I have seen misinterpreted in the past.
Things I won’t talk about: specific patients or any experiences of family, friends or acquaintances without specific permission. Any cases I discuss will be composites of patients with all names changed. I do not get into discussions about “what is the worst death”, “what is the worst you have seen”, “what diagnosis would you kill yourself if you got” or any such nonsense. Because A. That is nobody’s business and B. Why the HELL would I scare people who might get whatever diagnosis I spouted off about? Besides, my job is ensuring people are as comfortable as they choose to be (more on that later) no matter what their diagnosis is. Part of my responsibility is to consider everyone who is listening to what I say and how the information I provide is going to be carried forward in their lives. This will come up again in discussing advanced directives.
My other goal is to provide a place to ask questions and look for resources. So please feel free to comment. Comments will be moderated for relevance, content and respect. So don’t be a dick. And take a look at the ‘about me’ as well as the disclaimer page.