Hospice Patients Alliance: Patient Advocates





The Root of Advocacy



by Ron Panzer

October 17, 2013



"Where there is no vision, the people perish ...." - Proverbs 29:18



Do you ever wonder why we should care at all? With all the craziness and madness around, why bother doing anything about it? Why not just retreat to a little corner in the world and forget the rest? It might seem like it would be much simpler that way.

But even though we feel like forgetting it all, we can't escape the world. Wherever we go, the world is there with all its ups and downs and struggles. Good and evil are ever present no matter where we travel, even if we're all alone, because they live within each one of us.

Of course, some like to believe there is no such thing as good or evil, that nothing matters, but they quickly change their tune the very moment something bad happens to them and affects their world. Then they scream for help and justice like anyone else.

Their protests aside, good and evil do exist as forces in the world, and even in different cultures and times, they are perceived in much the same way. Because we share a common human nature, we know what acts are good or bad for all human beings.

But why stop to help another person? Why not just keep going our own way and forget about anything other than what we want? We stop and turn around, because somewhere deep inside our conscience informs us what is the right thing to do. When something bad happens to us, we realize that we may need help from others, but with perspective later on, we see that others also need help from us — that we're here for that very purpose.

If we are spiritually sane in that moment, we clearly see the wrong in choosing one path and the right in choosing the other. Others may be confused, but for us at that time, we know we must do something, that we must reach out and help, because not to do so is to allow harm to the other. Also, we know that we would become something less than who we were meant to be. Of course, the results do not always depend upon our efforts alone, because our efforts may be thwarted by conditions beyond our control or we may not have the ability or authority to change what is. We just know that we must at least try.

There may be others who have authority at the healthcare facility or organization, who think that how they are treating the vulnerable is appropriate, and certainly they justify their actions one way or another. But something is always a little "off" in their explanations, however high-minded they strive to appear, however "logical" their justifications may be.

Logic alone may be used to justify good as well as evil or unintentional error. In any case, their "justifications" don't matter when we see clearly the right and the wrong. They stand out like night and day, like a bright neon sign, irresistibly pointing us toward our true path, a path blessed by the One who gave us life — and a path that opens doors for miraculous happenings in our lives and the lives of those we meet.

But those in power often enjoy exercising their authority. They have planned out the way things are to be run, either with an eye to maximizing the revenue they personally take from the business, or if money is not their motivation, then the personal satisfaction that comes from exerting authority itself, or because they have convinced themselves of their position, even though it is mistaken.

If a patient or others get hurt as a result of that choice, it's something they consider unavoidable, as if their wishes were "the law." They don't care how much harm they cause to the mission. They view themselves as "the law" and are not only offended should anyone challenge them, they become incensed, whether they express that or not.

They make sure they get their way, using a heavy hand. However it is to be accomplished and whatever needs to be done, no matter the cost to others, they push right on. Anyone who stands in their way is ignored if they speak up, harassed if they make trouble, and even pushed out of the organization by making their position untenable. This is the culture of death at work, whether in healthcare or elsewhere. There are thousands of nurses and even physicians who have lost their job because they spoke up for what is right. This is the way of imposing force, the way of the bully and the oppressor, however politely and professionally it is expressed.

Anyone whose heart is open, whose eyes see what is happening, understands the suffering that will eventually result from some choices and actions. People are pushed aside. Their needs remain unmet. Their voice is not considered. They languish in their suffering, crying out with no one to come to their assistance, sometimes even dying as a result of the consequent neglect.

Many turn a blind eye to these conditions, choosing not to think about them and just go about their work, either forgetting the overall mission of their work or never having understood it at all. Plodding on, they just hope to get through the day, complete a task here or there, whether the patient is benefited or not. Much activity occurs, but it is not what the mission of healthcare requires. It is not done with the right spirit.

When a lowly private in an army gripes about having to go here or there and fight to capture a certain bridge or area, it's often because he just doesn't understand the overall strategy behind the general's decision. He doesn't understand the consequences and chain of consequences that necessarily arise from failing to achieve certain goals, from failing to do things in the right way in order to achieve complete success.

Strangely enough, just as the private's ideas of what is right or wrong arise from his limiting lack of knowledge and vision of the overall war being waged, healthcare facility or organizational administrators (even though they hold positions of power) may also lack knowledge and vision. They reject the true mission of healthcare itself. They may regard it as a business opportunity alone and not a calling to serve, or they may have another misguided understanding of the mission. They may have an agenda that harms the patients, whether knowingly so or not.

When those in authority fail to recognize or understand the mission of the work, when they fail to listen to the staff who speak up on behalf of the patients or the mission, they make decisions that oppress the staff and patients and create conditions that cause even more suffering — sometimes terrible suffering! The work is poorly done, and even though there may be some staff who are very dedicated, the mission necessarily goes astray.

As just one example, meals may be carefully designed by a dietitian to provide adequate nutrition for the patients. Those meals may be cooked and trays with food brought to the patient's room, but the patient's need to be fed is not considered. Administrators hire too few staff to feed all the patients who need assistance, and the food remains at the bedside uneaten, just out of reach of the desperately hungry patient.

It is no wonder so many patients lose weight and are diagnosed as having "failure to thrive!" It is assumed that with such careful dietary considerations having been given and the meals having dutifully been brought to the patient's bedside, the patient is not able to absorb the food eaten. That the patient is unable to feed themselves and is not being fed is too often overlooked! Many people cannot even imagine that such an obviously terrible blunder is being made even once, let alone over and over on a daily basis, week after week and year after year.

Or, those same meals are cooked and prepared just as the dietitian desired, and the patient is able to feed themselves, yet a custodian in the facility doesn't feel like keeping the kitchen as clean as ordered. "It takes too much time to do it that way!" he thinks. When a cockroach, fly, or other insect is found on the plate at the patient's bedside, the patient doesn't eat, grows weaker and sickens. Nobody but the patient understands why. Nobody bothers to ask.

Consider an elderly patient suffering from end-stage osteoporosis or a very painful cancer. Just moving an inch involves excruciating pain. If she doesn't move, she knows she may develop open wounds in her skin, decubitus ulcers, which if left unhealed, may cause a septic infection and even death. What a terrible dilemma!

Those administrators with authority often care nothing about the mission of healthcare. They may hire too few workers to meet the needs of patients like her and falsify the records to appear as if there are more staff working than actually are. Attention to the clinically-needed pain medications is not given. Either the patient is not given enough pain medication or is given so much that her death is hastened.

In many cases, when the patient calls for help moving, instead of two staff to help her, only one or none arrives. There is only so much the staff can do, even if they care deeply. The administrators have control of the staffing and how things are to be done. The patient then moves less, and when she does, she suffers more. Her end days are made even more painful and she cries alone, feeling abandoned by all. Her death is hastened in many ways and she dies in a hostile environment, without the support of loving caregivers at her side.

This is the culture of death way of working that taints most of the activities it engages in. This is the culture of death that kills those who are to be cared for. Its adherents do not care that it is not right. They don't even see that it is not right and many certainly do not consider themselves to be part of the "culture of death." They just consider themselves to be "professional" and act as they have been trained to do.

They have not been trained to respect the sanctity of life. They have no idea what reverence for life means. How completely blind are those who fail to see the mission behind their work. It is only by chance that they might do something of benefit to others. Of course, there are others who are consciously and zealously promoting the culture of death. These actively hasten death and know they are doing it, though they will often conceal what they are doing from those who would object.

Advocacy work promotes the well-being of the vulnerable and in need. Patient advocacy is one branch of the culture of life that is founded upon reverence for life, the fullest expression of our love. Those who have embraced the culture of life radiate that reverence for life when they interact with the patients and the public. Their kindness touches the hearts of those in need, whether in lifting a spoon to the lips of their patient, bathing and dressing them, tending to their wounds or administering treatments and medications that will help them.

The dear Lord Jesus mentioned such individuals (who embrace the culture of life) when He sent the twelve disciples out into the world: "Whatever town or village you enter, search there for some worthy person and stay at their house until you leave (Matthew 10:11)." These worthy persons have hearts that are open. They are generous and kind and open their homes to help others. In many cultures, the guest is treated with great respect as if God Himself or an angel were visiting (Hebrews 13:2).

Clearly, the patient's welfare ultimately depends upon the actions of those who provide care, and those who provide care must care, otherwise it is all a sham, a counterfeit of what healthcare is meant and needed to be. Patients may be rescued from life-threatening medical conditions by heroic interventions in the hospital emergency room only to be shipped off to a culture of death hospice or palliative care facility where their medically-stabilizing medications are removed, their food and water withheld, and sedatives administered so that they die within days or a week or so from dehydration and circulatory collapse. Does this make any sense?

Pro-life hospice and palliative care staff continue to affirm the life of the patient. So long as the patient is able to benefit from medications, they are continued. So long as they are alive and not imminently dying, so long as they can take that food and water in, their food and water are continued. Culture of life healthcare lovingly adheres to the traditional standards of care in both word and deed. Culture of life patient advocacy fights so that the patient's needs, clinical or otherwise, continue to be met as conditions change.

Relationships founded upon love display an order that is in harmony with the divine and the natural law: family members support, respect, and care for each other; members of society provide goods and services to the others; healthcare staff lovingly promote the well-being of their patients; administrators manage their facilities and agencies with an eye to the overall mission. It is love that inspires the vision for all activities within the culture of life, and all staff, as well as other nonprofessionals, serve as patient advocates.

When care is provided rightly, not only is the welfare of those in need assured, it promotes the happiness of all involved, caregiver, patient and family. Care motivated by our love and properly provided, as well as action rightly performed, appear right to the spiritually sane (those whose hearts are inclined toward God with faith). Those actions are recognized to be good. They awaken an appreciation of our sense of what is beautiful, so some have been led to say, "Love is a beautiful thing."

St. Thomas Aquinas says that "beauty and goodness in a thing are identical fundamentally,"1 but that the idea of goodness has the sense of being an end or goal sought by each one of us, while beauty pleases when seen. He also says that, "beauty includes three conditions, "integrity" or "perfection," ... due "proportion" or "harmony"; and lastly, "brightness" or "clarity ...."2

While there are additional ideas about what qualities define beauty (such as a sense of symmetry and balance), we can understand that when we see care that is really helpful to the patient, we can recognize that it has integrity, that it is accomplished perfectly (in that it provides what is needed), that care is provided in a way that is proportionate to those patient needs, that it is in harmony with what is needed to maintain life for the patient. We know for these reasons that it is both good and truly beautiful. "Everything within us" tells us that it is right. We recognize that it is in harmony with the divine as well as the natural law.

When we see something that does not feel right and is immediately perceived to lack beauty or goodness, or leaves us empty and uninspired, disturbed or even horrified, then we can understand that it not only is not beautiful or good, it really is not right. It is wrongly done. Culture of life patient advocacy fights to correct these wrong activities and restore the right direction of care and actions so that the provision of healthcare promotes the patient's well-being. Mistaken decisions can be reversed — returning care to the right path — thereby affirming the life of the patient and the mission that healthcare is meant to serve.

What do we see in the culture of death? Patients are physically or medically-restrained against their wishes, sometimes even physically beaten or sexually abused; too few caregivers are assigned to provide for the patients' needs; inadequate attention is given to all the standards of care, and epidemics of medication errors and other violations actually harm the patients. Treatment is denied. Patients, families and others are misled by giving them false "justifications" for the actions taken or not taken.

Over 400,000 patients die each year from medical errors in the United States, making healthcare the third leading cause of death! How ironic that care that was supposed to protect the patient's health actually violates the heart of the mission and ends in killing the patient!3

Most patients are not in any condition to fight for their own needs, so others must serve as patient advocates when the administrators and staff do not naturally do what is right. In a culture of death healthcare setting, it is frequently found that staff do not always do what is best for the patient. Other considerations govern their decisions and actions. When some might wish to do the right, bureaucrats who control and limit funding may narrow the choice of options to be offered to the patient.

Even if funding is adequate, money alone can never overcome the wrongness of how things are done within a culture of death healthcare setting. The process of how each thing is done matters tremendously!

Money is often wasted, fraudulently obtained, or spent on interventions that do not truly contribute to the well-being of the patient. Those who work in a culture of death cannot understand why their efforts do not succeed, but it can only be as it is, since the administrators who control policy, as well as the staff, do not consider the patient's well-being as their highest priority. Revenue, power, status, reputation, or any number of other concerns are placed ahead of the patients!

However, if we are striving to fulfill the dear Lord's will in what we do in this life, whether in the healthcare or organizational setting, or in our own personal lives, we must be willing to correct our actions at any moment when it is within our power to do so.

This is where the virtues of humility and honesty open the way for us to choose right actions in life, even if in doing so we must admit we have made a mistake. In this way we may turn back from our error and live and act in a way that best serves the mission at hand. All of us being imperfect human beings, as we become aware of our errors, we continually correct ourselves in order to live in harmony with His will.

Parents and coaches tell the young athlete, "Give your best effort and then you can accept the results, win or lose, with a healthy pride." "You did your best!" In life, this is all we could ask of any other or ourselves. In our work we must ask ourselves, "Is this the best we could have done?" Have we been willing to adjust our methods and actions in order to achieve the goal? "Is what we have done good or beautiful to behold?" "Does it truly represent the mission we serve?"

Many of the Pharisees in the time of Jesus proudly thought and asserted that they were righteous (or good) even though within they were arrogant, selfish and evil. Some may simply have been confused, but like many of those in authority throughout history, they used that authority and turned deaf ears toward those who pled for mercy.

Because they were not spiritually sane, their hearts were not truly inclined toward God. In calling for the death of the dear Lord, they thought they were doing what was best for the nation and themselves, but in rejecting Him, they did wrong.

Zedekiah, king of Judah (during the reign of Nebuchadnezzar the king of Babylon), chose to listen to the advice of the false prophet Hananiah while rejecting the word of the Lord given to him through the prophet Jeremiah. He decided to do things differently than Jeremiah advised. Zedekiah therefore lost his kingdom, his family and friends and was blinded and enslaved in Babylon (Jeremiah 28).

Failing to listen to those who have one's best interests at heart and who possess wisdom results in terrible suffering eventually over time, whether one is a king, a nation, an individual, a healthcare agency or organizational administrator. Patients who do not follow the good physician's advice suffer and their health declines. The Pharisees of Jesus' time, for example, did not pause to listen to the voice of those who saw clearly and were spiritually alive, so they did terrible things that oppressed others.

Their hearts were hardened. Their minds were closed. They could not perceive the real mission God intended them to accomplish. They were sure they were right, yet they were so wrong. History is filled with such examples. Why do we imagine or assume that we would never make such mistakes, that we are righteous? Perhaps it is because we are similar in many ways to them. We are "proud man" who fails to see his or her own flaws and assumes he is right and following the right direction.

To those who viewed them from a worldly standpoint, the Pharisees had power, authority, wealth and all that these could give them. They were well-respected and thought to be doing everything necessary for the welfare of society. They were leaders esteemed in the highest circles. They busied themselves with what they considered very important matters, yet they ignored the actually important matters: "justice, mercy and faithfulness." From a spiritual standpoint, they were beggars — "blind guides" destined for terrible suffering. (Matthew 23)

Administrators may also busy themselves with all the activities necessary to maintain healthcare or organizational operations. So many things need to be done, and they choose to do all of these things in a way that reflects their priorities and their understanding (or lack thereof) of the mission. If they fail to honor goodness and beauty in their choices, if they fail to open their hearts (so that the principles of justice, mercy and faithfulness do not guide their choices), then the results will speak for themselves.

In what they choose to do, doors are closed to the miraculous and wonderful. In what they do, His blessings are rejected. In what they do, His will is not fulfilled, and relationships are torn apart. Alienation and suffering flourish. They do not consider the damage done to the organization and its mission. These same questions must be considered in each of our lives: do we honor goodness and beauty in our choices? Are our actions inspired by justice, mercy and faithfulness to God?

Seeing that in every moment of our lives we make choices and then act, our entire life is one continuous process of choosing and acting in the present moment. Our entire life is a series of opportunities to either open ourselves to His guidance in our choosing and acting, or to close ourselves to His guidance in our choosing and acting.

Why do we advocate for those in need? For those reasons. Those who seek to please the dear Lord will strive to honor Him in each and every thing they do or create, in each and every way they contact others as they network with others in the world, in each and every relationship. Whether working within healthcare itself, in advocacy or other organizational missions, they will be eager to open themselves to hear what others of faith have to say and will seriously consider their advice (Proverbs 11:14; 15:22)

In order to discern the wisest path for their people, Native American tribes met in councils composed of their wisest leaders; Americans and people of all nations throughout history have met in local councils composed of their wisest leaders. Christian and other religious communities did so as well. The practice of listening to those with wisdom to share assures that the right advice is heard and hopefully followed. As it was written:

By wisdom a house is built,
   and through understanding it is established;
And through knowledge its rooms are filled
   with rare and beautiful treasures. - Proverbs 24:3-4

Those who follow Him know that Jesus said, "For where two or three are gathered together in My name, there am I in the midst of them." (Matthew 18:20) They recognize that the blessed community of believers is His church, and they remember that we are instructed that whatever we do, we are to: "... do it all for the glory of God (1 Corinthians 10:31)."

So we must ask ourselves, "Is this worthy of Him?" "Would He be pleased with this?" "Would He approve how I treated this person or patient today?" Before embarking upon a new direction, we must ask ourselves, "Is this what He would will in this situation?

The motivation for those who promote the culture of death is often their own personal pleasure, power and control, acquisition and pride. The motivation for those who serve the culture of life is the dear Lord and His love which has filled their hearts. They do not thirst for power; they thirst for that which is righteous and good. Each morning, noon and night, they thrill with the presence of the Lord. He fills their hearts with joy, and in response, they can only cry out, "Thank You!" "Thank You, Lord!" "You are glorious!" "You are mighty!" "You are worthy!" "You are beautiful, dear Lord!"

And when His disciples serve the patients, only good-will motivates their every action. In the culture of life, they are clothed with generosity, kindness, mercy and love.

The spirit of patient advocacy arises naturally within the spiritually sane as a response to the needs of the vulnerable. Patient advocacy is ultimately based upon our relationship with the dear Lord. Right reason helps us to understand that our ultimate good is found in pleasing Him, and that when we serve our patients, we are truly serving Him.

Right reason instructs us to give careful thought to what choices we make and the actions we actually do. Right reason shows us we must honor the principles of truthfulness, justice, mercy and faithfulness. It reveals why and how we must advocate for the patient's welfare and for the lives of the vulnerable.

Right reason helps us to remember that not only "where there is no vision, the people perish," (Proverbs 29:18), but that no matter how hard we work or how much we do, where the vision is lost, our mission eventually fails! There are consequences for our choices.

If we leave the right path, we walk in darkness in a direction that takes us away from our goal. When our actions do not reflect the spirit inspiring our mission, we go astray and cannot reach the intended goal. The apostle and author of the Epistle of James tells us that we must caution others who are following a path that will bring suffering and spiritual destruction (James 5:19-20).

The right application of reason affirms the vision of our pro-life mission which is founded upon the love He places in our hearts. The virtue of humility helps us to receive correction and then do what is best, making choices that are in harmony with the ethics of life.4

This constant self-correcting process is fundamental to the provision of healthcare and the culture of life. This is why in an organization with integrity, great attention is given to remain true to the mission, with quality improvement, proper supervision of all activities, and assessment of the actual results achieved through the actions undertaken. When an organization has integrity, its leaders and staff remain true to its mission in all that is done and how each activity is done.

Right reason and faith in the One who is the true good in life lead each of us to what is good in our own lives and in the lives of the patients and public we serve. This is how the real spirit of patient advocacy is born.





Endnotes:

  1.    St. Thomas Aquinas, "Whether goodness has the aspect of a final cause," "Treatise on the One God"
            Summa Theologica, FP, Q 5, Article 4. Back

  2.    St. Thomas Aquinas, "Whether the essential attributes are appropriated to the persons in a fitting manner"
            by the holy doctors? "Treatise on the Most Holy Trinity," Summa Theologica, FP, Q 39, article 8. Back

  3.    John T James, PhD, " A New, Evidence-based Estimate of Patient Harms Associated with Hospital Care,"
            Journal of Patient Safety, Sept 2013, Vol 9, Issue 3, p 122128. doi: 10.1097/PTS.0b013e3182948a69. Back

  4.    Ron Panzer, "Restoring the Culture of Life (The Ethics of Life in Healthcare and Society)," 2013, Hospice Patients Alliance. Back




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