Medical care, Advocacy, and Decision Making

Nearly everyone who receives any kind of health care, from major surgery to an ingrown toenail, will need to manage their own health care or have a loved one manage that care.  Decisions will need to be made about what kind of care should occur, and whether, for example, a person will be resuscitated if his or her heart stops.  

Discerning what care and what treatment should be done and not done can be stressful.  Monitoring care can be tiring.  Add to that the significant risk of inadequate or incorrect care occurring, and the situation can feel  overwhelming.  

This article is meant to provide you with the necessary tools to advocate for yourself or an ill or hospitalized loved one, including some of the information you will need to navigate choices on resuscitation status and treatment decisions.

Every patient, on admission, is asked if they have a Living Will and what their resuscitation status is. These questions can be a shock, especially if you're not expecting them.  

And you wonder, What's the right thing to do?  What are the best choices for me and for my loved ones?  Which choices are ethical?  How can I keep my loved one safe in the midst of a health care system which is often broken?

The very first place to start is to view these decision making opportunities within a guiding medical ethical framework.  Begin with the precept of "Do no harm," and continue forward with "Care for with compassion and competence." 

Do no harm.

This is the first, best rule in medicine and in life. 

In health care, as in life, unintentional harm occurs. Medical malpractice is, sadly, far more common than it should be in our heath care system.  The numbers are astronomical: between 250,000 and 450,000 Americans die yearly of preventable medical mistakes. Sometimes nurses or physicians are understaffed or under-tooled for the care they are expected to provide.  They make mistakes, and in medicine, mistakes can cost lives.  Try not to let this happen to you or someone you know.

The most basic way to implement the "do no harm" principle in preventing medical mistakes is to carefully watch over your own care and that of your loved ones.  Be sure you note on your medical records who you would like to be your medical advocate, to be allowed, with HIPPA priviacy laws, to be your representative.  You can do this at most medical clinics and at any hospital. It's best to do this in advance of a medical crisis or emergency.

Be physically present, if possible, especially if someone is in the hospital.  If you are not the patient and unable to be there in person, speak via phone frequently and directly to physicians and nurses. I recommend calling the nurse caring for a patient twice daily, once on each shift for a status report. Since nurses work 12 hour shifts, the best time to call is at 9-10 in the morning and at about the same time on evening shift. This gives the nurse time to know his or her patients and to see to urgent medical matters before attending to telephone calls. 

First, call the nurses station for the unit where the patient is located.  Ask to be connected to the nurse caring for the patient.  Should they be too busy to speak at that time, leave a message that you would like to be called when they have a moment.  If 2 hours goes by without a call, call back. Be collegial; thank them for caring for your loved one. Remember, these are good people caring for seriously ill persons.  They may or may not be short-staffed but are trying to do their best in tough circumstances.  

Then, ask questions.  What has changed since the last time you called?  How are the vital signs, lab values?  In the nurses' judgement, is the person better, worse, or the same as your previous check in? If so, how? Clarify the medical plan. Are new tests, procedures, or specialists ordered? If so, why, and when? Follow lab values and test results in mychart. Inquire as to changes and what these mean. 

Ask to be called on the phone during the time when the physician is seeing, or "rounding" on your loved one, so you can hear on speaker phone what is said daily during physician hospital visit time. (Or, ask that the doctor or specialist call you with updates.) Be sure staff knows to call you with any serious changes or downturn in the medical condition. Be sure this is noted in the chart and passed on in oral nursing report. Be polite when interacting with health care professionals, but don't be shy. 

If something doesn't seem right, it might not be right.  Inquire. Discern. Then, if need be, advocate assertively.  Be sure the correct care is occurring and that the staff person is able and trained to provide the care. It can feel awkward to question a medical providers' judgement or practice, but it is far better to do so than to be harmed or have a loved one be harmed on your watch.  

On a professional and personal note: I have seen patients harmed, sometimes nearly lethally, from medical malpractice, wherein the doctors and nurses did not have the expertise to do the procedures they were doing or the staffing to provide safe care.  Monitor the care closely. It is not an insult to ask a doctor or nurse how familiar they are with the procedure and equipment or how many of these procedures or surgeries they have done.  You want experienced professionals doing life and death procedures, not newbies. ( I usually refuse to have  nursing students or inexperienced medical students or resident doctors do procedures on me or my loved ones.)   If they do not have the requisite experience, just say no and wait until someone who does have the experience can do the procedure.  If staffing is insufficient for safe care, call the nursing manger or the hospitals patient advocate. This is the person who does what is called risk management. 

Next: During the course of any medical care, questions will be asked about the goals of care and the status of decisions on Living Wills, Resuscitation status (also known as code status), and Durable Power's of Attorney for Health Care.  The remainder of this article focuses on these aspects.  

Many people have confusion about the terms Living Will, Code Status, POLST form, and Durable Power of Attorney for Health Care.  Please refer to: Advanced Directives:  A Glossary of Terms,  https://illnessandgriefsupport.com/advance-directives%3A-termsADVANCEDDIRECTIVES  for more info.  

Decisions regarding medical care are best made within the context of a particular health care situation AND from within a guiding moral framework. In other words, particular decisions are best made within the context of a particular illness or situation, not in some sort of hypothetical situation where: "If this happens to me, then I (think I might) want that."

Good guessing and good intentions are not enough. Intentions and deeds, along with Living Wills and other tools for advance care planning must have solid medical information as a base and be grounded moral decision-making. It's essential to anchor medical decision-making on a foundation which acknowledges every person as a human being rather than a human doing. 

A definition of human worth based on functionality alone is impoverished, and leads to discrimination towards seniors, persons with disabilities, and others who are vulnerable. Unintentional discrimination against people based on a perception of a persons' cognitive or functional status occurs commonly among medical and nursing staff.  

A health care professional seeing an frail-looking older person in a hospital gown ( who may be temporarily confused due to medications or the hospitalization), can make a judgement that this person is too old be the recipient of certain kinds of care.  He or she may unintentionally de-personify the person, not knowing anything about their personal life or how the person is functioning at home. They may see an 80 or 90 year old, and not know they are well loved and loving, living with some help, but happy and mostly healthy, and, by their own definition, worthy of care to get better.  Ditto for someone who is differently abled, using a wheelchair or assistive devices, or has Down's Syndrome or cognitive delay. Without knowing what a patient's life perspective and medical goals are, a health care professional may make an errant judgement limiting medical care choices, often without checking with the patient or their designated decision maker.  

Medical decision making is never "one size fits all." It should always be, "one size fits one."  What this means is that particular, nuanced decision making based on the person and their circumstance-in-the-moment, is always best.  Shoe-horning people into cookie-cutter-medical-decisions is never right, but occurs more often than it should.  

Decision-making junctures occur at intervals during wellness and illness. Different decisions may be preferable at different times, depending on medical acuity, status, and capacity for recovery. 

Obviously, a young, strong person with no health care problems who incurs a sudden injury is "full steam ahead" in terms of CPR and medically aggressive care. A frail 100 year old with dementia is a different story. And anyone in between is variable, depending on the specifics of each case. The frail 100 year old, for example, absolutely could not survive CPR: her bones would be broken and severe pain and certain death would result. It would not be a good choice. A 50 year old with advanced cancer might very appropriately fill out a POLST form requesting "Allow Natural Death," while a 70 year old with chronic health issues might choose full CPR and aggressive treatment.

The point is that there is a wide range of moral, acceptable, and permissible health care choices. And there are some foundational "Do no Harm" and "Care for with compassion and competence" rubrics which help guide decision making.

One a personal note: I believe that it is both harmful and immoral to intentionally hasten the moment of death, either by means of assisted suicide or passive or active euthanasia. I have directed two state wide anti-assisted suicide campaigns and believe it to be unnecessary in the context of good hospice and palliative care. And I have seen legalized assisted suicide place vulnerable older people and persons with disabilities at risk for financial coercion.  (I once spoke to an older woman, in a state where assisted suicide is legal. She told me her son thought she should chose assisted suicide so that his inheritance was not used up on her assisted living. She was thinking about it. Sadly, she is not the only person with similar stories I have spoken to.) If the problem is insufficient comfort or inadequate medical care, let's solve that problem.  Killing the person with the problem is never a good solution.  And it is definitely not merciful.    

However, allowing death to occur naturally is far different than intending to cause death to occur unnaturally, i.e. assisted suicide. Thus, if a person is in the end-stages of a terminal disease, and has uncontrolled pain, it is absolutely permissible to control the pain, even if the unintended side-effect is to shorten the life of the dying person. This humane pain control, using only necessary means, is there to assure comfort, not to kill the patient.

Care for with Compassion and Competence.

Choices about nutrition and hydration can be complex, and should be made in light of specific fact sets. If a person is not medically frail, of an advanced age, suffering from advanced or end stage disease which prevents them from processing or benefiting from nutrition and hydration, then generally food and water, warmth and shelter are a natural and humane means of providing comfort. Sometimes, when the situation is unclear, such as a moderate stroke, and one thinks this could be a temporary means of providing fluid in an acute medical situation until the prognosis is clear, then it is often a good idea to say yes to fluids, and then determine over time if this is beneficial to the patient and his or her recovery.  

I had a patient who had an acute stroke preventing her from swallowing.  Her Living Will was clear that she did not want hydration and nutrition and she was temporarily unable to speak clearly.  But she and I had spoken in advance about the  possibility of such an occasion.  I directed staff, on her behalf, to provide necessary nutrition and hydration.  She is now able to speak clearly, swallow without difficulty, and live her life as she chooses, with minimal stroke related aftereffects.  She is grateful her Living Will was not rigidly applied to prohibit food and fluid when she needed it.  Having a Durable Power of Attorney for Health Care who worked with medical staff to apply her wishes to a particular circumstance, was much better than having a Living Will, written well in advance of the situation, try to anticipate multiple possible future medical scenarios. 

In cases of very serious, life-limiting, or terminal illness, there is no moral obligation to postpone the moment of death or to seek unnecessarily burdensome or high risk treatments. In fact, adding nutrition and hydration, chemotherapy, surgery,  artificial ventilation (a respirator), or other aggressive treatment where it is medically contraindicated or at the end of life, can be inhumane and burdensome to the ill person. It can even increase end-of-life discomfort or hasten death. 

For example, I have had several family members who evidenced congestive heart failure at the end of their lives and were unable to process food or fluid without increasing lung congestion.  It would have been morally wrong to push food or fluid or put them on a breathing machine when the result would have been them dying while breathing like they were at the bottom of a swimming pool. As it happened, they died naturally and comfortably at home, and with family surrounding them. When possible, dying at home under family and hospice care is far more preferable than being hospitalized. 

The best plan in regard to medical decision making, is to discern the individual circumstances, obtain medical information about capacity to integrate and benefit from nutrition and hydration or other treatment such as ICU's, mechanical respiration, ascertain medical futility and patient preference, and choose what is medically beneficial or not beneficial to the person who is ill or injured. (This is assuming he or she is incapacitated and therefore unable to make their own choices.) If the medical situation is acute, and the person may recover, but more time is needed to determine prognosis and the possibility of benefit, it may well be best to choose treatment.  If the medical situation deteriorates and the person is unable to recover, then such treatment, such as a respirator, can be withdrawn.  Note: sometimes a more aggressive form of treatment may be indicated until family members can arrive, decide together the appropriate care choices, and, if the person is dying, say a loving goodbye during the active dying process.

A natural death is just that, natural. It is, or should be, the end point of each of our lives.  We all want good comfort and great care.  Most of us want family or close loved ones present.

In order for that to occur, it's important to have your decision-making ducks in row.  A Living Will can be helpful, as can a POLST form, for those who qualify.  (Please see other articles on this site re the definitions and explanations of  these items.) 

Please refer to The Five Wishes, https://www.fivewishes.org/for-myself/ if you do wish to execute a well written Living Will or Power of Attorney for Health Care.  It was developed by Mother Teresa's lawyer and has some excellent choices in terms of care and comfort.  In addition to have a form for Power of Attorney for Health Care, it has lovely, important sections entitled: "My wish for how comfortable I would like to be," My wish for how I want people to treat me," and,  "My wishes for what I would like my loved ones to know."  Each of these areas has options to write your wishes.  

The importance of "My wish for how I want people to treat me," became clear to me, not long ago, when I cared for a woman who was hospitalized after an acute medical event.  A host of medical providers were doing rounds, surrounding her bed, examining her body, speaking to each other and asking questions of me, her nurse, without looking at or speaking to her.  

The woman, who had some trouble speaking quickly, was alert and oriented, but medical staff behaved as if she were not physically or mentally present.  They were "busy determining the best medical treatment plan" for her.  Unfortunately, they did not include her, the person to whom these medical events were occurring in the "discussion" of her own care plan.  To me, it was obvious she was anxious and afraid; her eyes were brimming with unshed tears. She was beginning to shake. To them, she was another sick old lady in a hospital gown. And they were in a hurry.

The attending physician was speaking complex medicalese to his students, acting as if his patient was a medical object with an interesting set of clinical symptoms.  I interrupted him, looked directly at the older woman, touched her arm gently, and said to her, "How are you feeling right now? How are you doing?"  She responded, "I feel like I am being treated like a thing and not a person. Please, I want to be treated as a human being."  

The providers looked suitably horrified and chagrined. They had objectified this woman because she was old and ill, thereby increasing her suffering, loneliness, and isolation. And, from the looks of things, this was their M.O. with other patients.  I said to each of them in turn: "Never, ever do this to another person again.  Even if a patient can't speak back or is slow to respond, direct your inquiries to her or him anyway.  Look at the person.  From now on, treat every person you care for with the dignity and worth you would like to be treated with." 

The woman recovered well, but understandably, had PTSD with respect to her hospitalization.  Eventually she was able to heal, but the degree to which she felt vulnerable was significant.  And, being a lovely soul, she was worried about what happens in the hospital to other vulnerable persons of different races or language preferences who do not have a nurse advocate to speak on their behalf.  She now works advocating for disability rights. 

In my experiencer, a Living Will is fine to complete, but the most important document to execute is a Durable Power of Attorney for Health Care.  This means that someone you choose has the legal authority to discern your wishes in a particular medical situation and direct your health care providers accordingly.   

Each of us has a duty and a responsibility to do no harm and care for ourselves, family members, friends, and patients with compassion and competence.  Any moral decision-making matrix has that at its base.  Moreover, prioritizing the dignity and worth of every human being, regardless of age, race, gender, ability status, health condition, or cognitive capacity, is a must.  Circumstances can be burdensome, people never are. 

Additionally, we must reach out to populations at-risk for poor end-of-life care and provide them with truly compassionate care,  accompanying them on their journey through illness, with the help of excellence in end of life care, and support for caregivers and family members, information, and resources.