There is a deeply touching diary at the top of the rec list this evening. Reading it and seeing what went right there - the diarist's ability to make the choices her husband would have wanted - inspired me to think this old diary of mine might be worth digging out of the archives to re-publish. I've updated a line or two and fixed as many of the typos as I could find. Likely not all. I hope it might be helpful to someone. The time to think about end of life issues is when you are well - not when you are sick.
Disclaimer: I write as a nurse, not as a lawyer. I think we have reached the point now where most states have laws similar to what I know in California, but you should check. If you use the software I did, the state-specific stuff is built in.
As a nurse and healthcare activist, one of my greatest frustrations is in seeing patients at the end of life getting care they would not want and from which they cannot benefit while their nurses burn out and their families struggle with what seem like impossible choices. Not to mention burning through staggering amounts of scarce healthcare dollars, but I don't really want that to be part of this discussion.
What I hope to do in this diary is to share some of what I know after 30 years as a Registered Nurse that may help you or a loved one avoid some of the traps I have seen far too many patients and families fall into. There is much we can't control about the end of our lives, but the care we receive is one of the things over which we can hope to have some control.
Scenario: Ellen is 85 years old. She has high blood pressure and type II diabetes, but is generally well and active and lives alone in a small home. She likes working in her garden. Her daughter, Sue lives only a block away and visits frequently. They have talked generally about end of life issues but nothing has been written down. Ellen has always said "I don't want to be kept alive on machines." but nothing more specific than that.
One day, Ellen suffers a massive stroke that leaves her unconscious, unable to move or speak, but breathing without difficulty on her own. She is alone when it happens and Sue does not find her for a while after. Since the event was not observed, no one knows for sure what time it happened. Paramedics are called and she is rushed to the hospital, where she is admitted to the medical ICU. She is receiving supplemental oxygen and intravenous fluids and medicines to reduce swelling in her brain. After a couple of days, there is some slight improvement in her neurological status, but not much. By this time, Cindy, her younger daughter, has arrived from the other side of the country. Cindy and Ellen have not been close in several years, but now Cindy's grief is extreme. The doctors approach the daughters for permission to start tube feedings. They tell the daughters there is little hope for recovery, but that feeding is needed if she is to have any chance. Cindy is very anxious to begin the tube feedings, saying "We can't just let her starve to death." Sue is ambivalent. Would her mother want this?
This is the kind of dilemma patients and families face every day in hospitals. I'm a cardiac rehab nurse, not an ICU nurse, but I'm in and out of the unit almost daily and have plenty of chances to see the struggles that go on there. What I hope to do in this diary is open up discussion, provide food for thought, share some knowledge and share some of my own experiences and what I learned in creating my own Durable Power of Attorney for Health Care. And explain why and how you should create one too.
In addition to the professional experience, I also have a personal experience with my own mother. Faced with deteriorating health in old age, my mother decided to end her life and took a big overdose of the narcotics she had hoarded from my father's time as a hospice patient. The overdose did not kill her, but left her comatose, with occasional periods of confused and combative semi-consciousness. We had to face the choice to begin tube feedings or not. It would have been easier if she had left us some guidance, but we had to do the best we could. Here was my thought process: She found her quality of life to be unacceptable with the health problems she had. Now, in the very best case, she would be much more disabled than before. She has made her choice clear by her action, my duty to her is to support that choice. We chose not to place the feeding tube and once that choice was made we also shifted the focus of care to comfort rather than cure. I asked the attending physician for some specific orders, including narcotics as needed for relief of pain or shortness of breath. We removed the rather modest amount of supplemental oxygen she was getting and she died in a remarkably short time, very peacefully.
Many people make statements like "I don't want to be kept alive on machines" But the actual decisions we deal with are rarely so cut and dried. The ventilator breathing for the patient is pretty dramatic and is obviously in the realm of what most people would call "life support". but what about IV fluids? Tube feeding? Antibiotics if you develop an infection? All assuming you are unlikely to recover and unable to express your wishes?
A couple of years ago, I went online and bought a copy of Quicken Willmaker Plus from Nolo Press.
This software led me through the process of making my own advanced directive and Durable Power of Attorney for Healthcare. I highly recommend it.
Now I'd like to share some of the choices I made in the process and discuss them a bit.
The most critical step, and the most powerful way to ensure your wishes are carried out, is the appointment of an agent for health care decisions.
This is the person who will speak for you if you are unable to speak for yourself. Naturally, this only becomes operative if you are unable to express your own wishes and seem likely to remain that way for some time.
As a married person, my primary agent is my wife. This would be common, but need not be the case. The person you appoint must not only be trusted, but must understand and - hopefully - agree with your choices. Your agent's duty is to carry our your wishes, but it's not fair to ask someone to do something that conflicts with their own morals and values.
You should also consider appointing a secondary agent - the backup in case your primary is unavailable or unable to function. Mine is a close nurse friend with values - and experiences - similar to mine.
The next section of the software gives you options on the authority granted to your agent. I chose to make mine very broad. I'm trusting these people and don't want them hamstrung by limiting their power. Here's what mine looks like:
Agent's Authority
Unless I have specified otherwise in this document, I grant my agent full authority on all matters relating to my health care, including full power to give or refuse consent to all medical, surgical, hospital, and related health care.
X____ By initialing this paragraph, I expressly authorize my agent to make decisions to withhold or withdraw life-prolonging treatment, which would allow me to die, and I acknowledge such decisions could or would allow my death.
X____ By initialing this paragraph, I expressly authorize my agent to make decisions to withhold or withdraw artificially administered food and water, which would allow me to die, and I acknowledge such decisions could or would allow my death.
My agent's power includes, but is not limited to, the authority to:
• hire and fire medical personnel
• visit me in any hospital, hospice, nursing home, adult home, or other medical care facility
• in accordance with the Health Insurance Portability and Accountability Act, and as my personal representative, request, receive, and review any information, verbal or written, regarding my physical or mental health, including medical and hospital records and other protected health information, and to execute any releases or other documents that may be required in order to obtain such information
• in accordance with any other instructions I give in this document, sign any documents required to request, withdraw, or refuse medical treatment or to be released or transferred to or from a hospital, hospice, nursing home, adult home, or other medical care facility
• authorize my admission to or discharge from (including transfer to another facility) any hospital, hospice, nursing home, adult home, or other medical care facility, and to execute any releases or other documents that may be required to do so
• choose where I live and receive care and support when those choices relate to my health care needs
• sign any waiver or release from liability required by a hospital or physician, and
• contract on my behalf for any health care related service or facility, without incurring personal financial liability for such contracts.
Pretty sweeping. There are some other legalistic parts having to do with issues like the disposal of your remains and such. Then comes what I consider the real nut of the thing. What are your wishes for care? It's time to get a lot more specific than "no life support".
The program leads you through some of the process pretty much step-by-step. Here's how mine turned out:
I direct that my health care providers and others involved in my care provide, withhold, or withdraw treatment in accordance with the choices I have indicated below.
If I have a terminal condition, I want:
• artificially administered food and water to be withheld
• all additional life-prolonging treatment to be withheld, including: blood and blood products, cardiopulmonary resuscitation (CPR), diagnostic tests, dialysis, drugs, a respirator, and surgery.
If I am permanently unconscious, I want:
• artificially administered food and water to be withheld
• all additional life-prolonging treatment to be withheld, including: blood and blood products, cardiopulmonary resuscitation (CPR), diagnostic tests, dialysis, drugs, a respirator, and surgery.
Next, the program offers you the opportunity to make an additional statement of your wishes and values. Here's where my personal experiences as a nurse came into force most strongly. I'm not offering my version as a suggestion for what you should do, but more as an example of some of the issues you might want to think about:
Personal Values Regarding End-of-Life Decisions
It is my belief that two fundamental components of human life are cognition and communication. Without these two, there is no truly human life, merely vegetative existance. I would ask that my agent and caregivers are mindful of this belief in any decision making regarding my care.
Other Wishes Regarding My Health Care
Should I become incapacitated by reversable acute illness or trauma, I would wish the maximum of treatment as long as there is a reasonable chance of a return to full functioning. I am willing to tolerate arduous treatment as long as there is a reasonable hope for full or nearly full recovery. Should there be little chance of recovery, I would not want life sustaining treatment and would want maximum relief of discomfort, even at the risk of shortening life.
Should I become incapacitated as a part of the normal process of aging or the progression of chronic illness, I would not want life sustaining treatment and would want palliative care and maximal relief of discomfort even at the risk of shortening life. I would specifically approve the use of opiates for relief of shortness of breath even at the risk of suppressing adequate respiration and shortening life.
For purposes of the above, I consider "life sustaining treatment" to include not only CPR and artificial ventilation, but also artificial hydration and nutrition, antibiotic treatment, inotropic and pressor agents, renal dialysis and oxygen by mask or cannula
Pretty much everything in that last part is the result of hard experience and watching the struggles of families and caregivers with some of those issues. Here are a few random personal thoughts: In the days before modern medicine, most folks who survived into old age died either from infection or from the inability to take food or fluids. Sometimes very old people died from the choice to stop eating and drinking. Dying in that way is not miserable, but is rather a slow shutting down of the life processes. Natural death. On breathing: Severe shortness of breath, the inability to get enough air, is a truly miserable feeling. Try a bag over your head for a few seconds. The good news is that feeling can be almost totally relieved by morphine. But in the process of relieving the bad feeling, it also suppresses the drive to breathe. Do you want to buy a few more hours of life at the cost of spending them gasping for breath? Not me. I'll take the morphine and made that very clear. Finally, as I have alluded to earlier, sometimes the intervention that sustains life beyond the time of natural death is not as dramatic as a breathing tube and ventilator. It may be an IV antibiotic, or a tube feeding, or even - as it was in my mother's case - a few liters of oxygen by nasal cannula. If I become terminal, and past the point I can communicate, I want all life sustaining treatments stopped, not just the big dramatic ones.
The document then finishes up with a few more legalistic bits and a signature page. If you use the software I recommend, it will customize all of that for the laws of your state. Once the document is signed, make several copies.
Save the original for yourself, and give copies to: Your primary and secondary agents, your personal physician or other primary care provider, and other family members who are likely to be around. If you have an existing record at your local hospital you could call the medical records department and see if you can put one in your record.
Hopefully, you will have given yourself some peace of mind, knowing that you have done all you can to make sure you are cared for in the way that you want.
Update: Here is another worthwhile diary looking at the same issues from a somewhat different perspective, more focused on communication with loved ones about your wishes.