Some folks responded to my last article, “For Her Safety” by asking me to write in more detail about the abominable tragedy in that short story. The topic is massive, and I can’t do it all justice in the scope of an article like this, but I hope to be able to give you some things to think about, things to do and put in place, and at least a few links to more complete information. Some people may object to this article because it requires working within the “laws” and dealing with the bureaucracy, but those things are impossible to ignore if you want to navigate the overwhelming forces set against you in the political reality of today.
Dying with dignity, in the setting of your choice, is possible. Laws regarding “patient rights” and such things as durable power of attorney (DPOA), “do not resuscitate” (DNR) options and hospice care can help a great deal with that process. But they can’t help if you are not diligent to put them in place.
First and foremost, it is important to recognize that every single person in the world is going to die. I never cease to be amazed by how many people simply do not consider or face this very obvious fact. We will all die. We may or may not have any control at all over when or how it happens, but like anything else — if you refuse to look at it and make what plans you can, you may be choosing the very worst possibilities by default.
Every person who is not living with their parents needs to execute a “Durable Power of Attorney for Health Care. “Look at a sample form here. (PDF format) This gives certain legal protections if done right, it doesn’t cost anything (beyond a dollar or two for the forms), and you do not need a lawyer in order to fill it out. Make several copies and give one to each of your designated caregivers, your doctor and another trusted friend. Keep the original in a safe place at home. Different states have various requirements, so get a form from a local hospital if possible.
The DPOA can be changed any time you wish. You need to make sure that the person you select to be your DPOA is both willing and able to do this for you, that they understand what you want and are willing to follow through on it. You should select at least one alternate and review both the people and your level of care selections at least once a year.
There are some things that a DPOA will not help, so take a look at the laws in your state.
The Living Will is a similar document, but it is not recognized by many states as binding, so even this fragile protection would be lost.
DNR, advance directives: these are instruments that go along with the DPOA and hospice care. Be aware of your rights and the limitations they may impose on YOU if you agree to them.
Most of you are also aware of the supposed “right” to refuse treatment or medications. While all of this looks most promising and good, there are deadly bear traps buried in the verbiage. Beware. It is vital that you do know your rights, fragile as they are, and have family or friends who can be your advocate when you are unable to fend for yourself.
The “crown jewel” of patient advocacy is hospice care. This care is available to anyone who has a terminal disease or condition for which there is no further treatment available OR for which they are no longer willing to seek aggressive treatment. Once enrolled in hospice, there are no further curative measures or medications given, only those to promote comfort and relieve symptoms. The patient or DPOA can change their mind at any time and return to aggressive treatment, but most do not — or come back to hospice quickly after realizing that there is nothing more to be done.
Hospice care neither prolongs life nor hastens death.
- Hospice staff and volunteers offer a specialized knowledge of medical care, including pain management.
- The goal of hospice care is to improve the quality of a patient’s last days by offering comfort and dignity.
- Hospice care is provided by a team-oriented group of specially trained professionals, volunteers and family members.
- Hospice addresses all symptoms of a disease, with a special emphasis on controlling a patient’s pain and discomfort.
- Hospice deals with the emotional, social and spiritual impact of the disease on the patient and the patient’s family and friends.
- Hospice offers a variety of bereavement and counseling services to families before and after a patient’s death.
Everyone I know who works in the hospice setting tries very hard to fulfill these goals, but the pressures of law, endless and often conflicting regulation, paperwork and the fear of lawsuits often make reaching these ideals impossible. Leaving patients in their own homes whenever possible used to be a solid part of these goals, but it is increasingly difficult today.
Do you know that it is against the law, in most places, to place yourself in danger? Especially if you are elderly! Elder Abuse laws may make it very difficult for the elderly to choose to stay home and take their chances on dying there without help. With all the “rights” and good intentions, this is simply not permitted unless death comes quickly and with no warning. Any health care worker, government employee (fireman, paramedic, mail carrier, etc.) is required by law to report any time they suspect that a frail elder is living alone and is unable to care for themselves to any degree. It is a felony not to report ANY suspected situation that would “endanger” the elderly, no matter what the elder has to say about it.
Nobody wants to see a person of any age being physically or emotionally abused, but the definition of those things must include the perception of the elder involved to be valid at all. If a person is bedbound, totally confused or unable to feed themselves, their families should be free to take care of them, but that is also almost impossible much of the time — for many reasons. There are many options available, many of them Christian based.
In great part due to the government anti-family socialist indoctrination throughout the last few decades, most families today are scattered all over the country, or are in isolated fragments, trying to make ends meet and care for children. The tax and regulation burdens make it almost impossible for many people to stay at home to care for either children or elders. And, sad to say, there are many government funded options that make this even less likely. It is a downward spiral that has taken on the strength of an ocean whirlpool, sucking everyone down into the depths of insanity to destruction.
All of the “welfare” and “help” the government dreams up only adds to the problem. Many people now in skilled nursing facilities (wrongfully called “nursing homes”) and in board and care settings (custodial care, not medical) draw on state medical aid to pay for them. Most of home health and hospice is also paid for by Medicare and Medicaid (click these for the rosy glow government version), along with the various supplemental and HMO insurance companies that dominate the whole fabric of health care and medicine in the US today. This not only requires massive taxing to fund, it completely sidesteps the free market and makes the use of that money inefficient and wasteful. There is little real incentive to let people be responsible for themselves, and every incentive not to.
The new and ever more intrusive “Obamacare” legislation will change this picture rapidly in just a few years. The entire fabric of medical care in the US will unravel soon, but it is beyond the scope of this article.
So, what can you do to have your last wishes honored and your freedom left intact until you die? Not much, but you can go a long way toward that goal if you follow these steps.
1. Talk to your children, no matter what age they are. Let them know what you want and what honoring your freedom and dignity mean. Repeat it at least once a year. Needless to say that this will be easier and far more effective if you have close relationships with those children, and maintain them throughout your life. If you have children who are already alienated, or who simply do not understand your desire for liberty rather than “safety”, you will have to be even more diligent with the remaining items, in addition to finding someone else to entrust with your affairs should you become incapacitated.
2. Make out a durable power of attorney for health care (and have a solid regular will for your property) You can get the forms from most hospital social services departments and some stationary stores. Read the information and discuss it at length with your family and/or trusted friends.
3. Insofar as possible, keep your debts low and make sure you could continue to pay the bills if you were ill. This is probably the hardest part to accomplish right now, but it has many other benefits and so should be a priority. Keep records of deeds, bank accounts and so forth in a central place and make sure at least two or three people know where they are and have access to them if you become seriously ill or unable to make decisions for yourself. Secrecy and your offshore bank account may seem smart now, but if you are suddenly incapacitated, you might be cut off from your money and helpless, no matter how rich you might be. Just make sure your trusted child or friend can access these things on short notice.
4. Don’t set traps for yourself. Many people swear that they would never tolerate a “live-in” caregiver, for example, but the alternative may well be a nursing facility! Don’t “set in stone” decisions against anything that might make the difference there, no matter how disagreeable it might be. Just remember that once you are unable to care for yourself, the options vanish fast.
And finally, don’t think it can’t happen to you.
I’ve seen death in many faces over my career. I’ve seen peace and joy, stark terror and pain, with every shade between. The inescapable fact is that all men die. You don’t have much control over the why or when, but there is a lot you can do about the circumstance, the “how”. Don’t let that liberty slip through your fingers.