Serious Medical Decisions: Walking with Family and Friends
Gerard S Brungardt MD BeL
March 25, 2011
“Jesus did not come to explain away suffering or remove it. He came to fill it with his presence.” Paul Claudel
“…an exasperated and overzealous treatment, even if done with the best of intentions, would definitely be shown to be, not just useless, but lacking in respect for the sick person who is already in a terminal condition.” John Paul II to physicians, March 2002
A Desperate Situation
Focusing the Big Picture
What Does the Catholic Tradition have to Tell Us?
Elements of Propoportionate (Ordinary, Beneficial) Means
Elements of Disproportionate (Extraordinary, Burdensome) Means
An Acceptance of the Human Condition
Factors to Consider
Putting It All Together … a Brief Guide
Summary – Therapeutic Obstinacy
When confronting serious medical decisions our attitude should be one of openness and wonder in front of a M/mystery greater than ourselves. We set aside preconceptions and attend to the person in need as well as those who are serving him (doctors, nurses, chaplains, others).
As we journey together, we weigh the burdens and benefits of the proposed course(s) of action. All pertinent factors that contribute to the ‘burdensome-ness’ or ‘beneficial-ness’ are considered in our thinking – medical factors, psychological issues, costs, family concerns, spirituality, and anything else that may come into play.
We have a long and rich tradition which tells us that we are not obligated to pursue excessively burdensome treatments that do not offer hope of improvement. We often see doctors and families pursuing very burdensome therapies that offer only a marginal hope of sustaining life with little to no hope of improvement in the person’s underlying condition. This reflects a vitalism that is not in accord with our tradition.
An 84 year old male executive with a long history of Parkinson’s disease is suffering marked functional decline (decreasing ability to talk with family and friends, much less able to care for himself) and weight loss. He has several other physical problems including ischemic heart disease, arthritis in his knee and severe cervical spine arthritis. He has had many surgeries including resection of a colon tumor, repair of a hip fracture, appendectomy and bowel resection.
He develops difficulty swallowing with occasional episodes of difficulty breathing so undergoes a tracheostomy (breathing tube in his neck) and feeding tube placement. He has been hospitalized several times in recent months.
He develops a urinary tract infection that extends into his bloodstream. His doctors recommend he be treated in the hospital with antibiotics and special medicines to maintain his blood pressure and organ function telling him it could extend his life by several weeks – months.
The patient chooses to stay home with family and friends and dies 2 days later. [coda]
Much of what we view as problems and dilemmas in the care of the dying arise from the application of technological advances in medicine. My aunt had a severe stroke last week, should she be kept on the ventilator? It is becoming increasingly difficult and burdensome to do dialysis for him, should we continue? Our Mom has severe dementia and is not eating much, should we put in a feeding tube?
The therapeutic armamentarium available for deployment by the health care system of the West is staggering in its size and complexity. All major diseases have not only first and second line therapies but third and fourth and more. The internet is awash with options for treatment and promises of cure. There are always research protocols to enroll in. The sick person in need wades into this battleground and often finds himself so caught up in the crossfire that he often cannot find his way back out.
At some point in this scenario, the natural dying process commences. A normal part of the dying process is the ‘shutting down’ of each of the other major organ systems. When this starts to happen, specialists for each of these organ systems are brought in to reverse the decline of ‘their’ organ. We now have multiple therapeutic options engaged for each of these organ systems in addition to those being tried for the primary disease.
The specialist physician approaches the diseased human body as a broken machine and attempts to fix what is broken. As a machine, so the human body will be nothing when it is dead and so everything possible is done to keep it working/alive. This is done in a very reductionist manner – each specialist working on their organ system and reporting the progress to the person and family. The person and family often have a skewed, unrealistic understanding of what is really going on because no one is summarizing the ‘big picture’ for them – both because no one may be watching the ‘big picture’ and out of fear of dimming hope – this latter is often an excuse for the physician’s own angst and discomfort with directly engaging the real issue of the patient’s mortality. When the person or a family member does have a sense of the futility of the situation, they often keep it to themselves to ‘protect’ the other. Add to this whole complex dynamic the fact that each of these visits, tests, procedures and treatments are highly remunerative for the specialist. All of this adds up to create what John Paul II referred to as “therapeutic stubbornness”.
Our attitude in these situations is fundamental, setting aside our preconceptions – “The doctors always want to do more tests and treatments.” “I bet the hospital just wants to save money.” “We have to put in a feeding tube.” – and opening ourselves to all the facts and sufferings and reality with which we are confronted. As Msgr. Luigi Giussani says, we should love the truth more than our attachment to the opinions we have already formed about it. (Religious Sense p. 31)
We want to come up with the right “answer”. There is usually not one right answer, but many varied and difficult paths we must walk with our friends and family. These are journeys without pre-made ‘black and white’ solutions. The details of the situation often change, sometimes daily.
We are all much more than our physical bodies … other “parts’ of us include our minds, our relationships, our soul & our desires. But the health care system tends to reduce us to our physical body as a biological machine. We must step back and take in all of reality and focus the big picture. It can be very hard for any of us to step back from the ‘trees’ of day to day care and decisions and hospitals and icu’s and look at the ‘forest’ of the person’s life but this is what needs to be done. Often a trusted family friend, pastor or other concerned person can help in facilitating a discussion with key health care personnel – the attending physician and/or the family doctor – and others involved in the person’s life.
We look then beyond just the biological situation of the body and take into consideration the psychological, social/family, and spiritual aspects of this person here and now. We will address objective components of her situation such as risks of further therapy, difficulties & suffering being experienced, costs of care, possibility of success, time of life & quality of life. We will also take into consideration subjective components such as fear, anguish, physical or mental suffering, feelings of degradation, will to live & importance of time left. All of these are viewed through the lens of the person in need.
What is the likelihood of cure? … of regaining function? Ours is not a vitalism – pulling out all the stops to keep her heart beating at the cost of every other aspect of her person. Remember that the vast majority of deaths today are preceded by a specific decision to stop some therapy or intervention that is not achieving its goal or is only partially achieving the goal and/or is imposing a burden on the person that outweighs any benefits.
The Catholic Tradition affords a long history of reflection and thought in approaching these kinds of situations. The language that has been used speaks in terms of ordinary & extraordinary means. More recently, many have found it more meaningful to speak about therapies or interventions that are proportionate or disproportionate to the benefit they provide. Similarly, many speak in terms of the burdens & benefits of care. (A side note – doctors tend to think in terms of risk-benefit … while patients think – and live – burdens and benefits. An intra-venous line is not very risky, but fairly burdensome to the patient in terms of being tied down, limiting activity, maintenance, alarms going off in the middle of the night, etc.)
The core principles on which our tradition builds its rationale.…
life is a fundamental (not absolute) value
negative precepts bind semper et pro semper (always and always)
positive precepts bind semper sed non pro semper (always but not always)
ad impossibilia nemo tenetur (no one is held to the impossible)
these duties belong to the patient
Life is a fundamental, not an absolute value. There are things that ‘trump’ physical life. We are called to lay down our life for our friend. The 2nd Eucharistic prayer tells us that Jesus “entered willingly into his Passion” (prior translation Jesus’ passion was a “death he freely accepted”). Martyrs have given up their lives for their faith. Life is a very important – a fundamental – good, but it is not absolute.
Negative precepts bind always and always. For example, “Do not kill” … we can always “not kill”. We are called to adhere to certain absolute precepts that tell us not to kill, not to rape or torture, not to lie. We are always able not to do these things, even if at the cost of our own life.
Positive precepts bind always – but not always. For example, “Feed the hungry” … we do our part to feed the hungry (volunteer at local soup kitchen, contribute to charity) but we are not expected to feed all the hungry everywhere.
No one is held to the impossible. This core precept is very important to the topic at hand. It would be unreasonable to be expected to do the impossible. Many of the situations that patients and families find themselves in today are so cruel and unusual, so futile, that a reasonable person is not expected to continue.
These duties belong to the patient. All of those around the patient can give their input, love and concern, can give their advice and listen with a sympathetic ear, but ultimately it is the patient’s life and health and it is in the deep heart of their conscience that they must weigh all the burdens and benefits and decide whether to continue the therapy or intervention. (Commonly the patient is not able to effectively participate in this decision making process. This highlights the importance of naming a durable power of attorney for health care – someone who knows you, knows your values, wishes and desires – who will speak in your best interest during these times.)
The Carmelite Fathers of Salamanca 17th century – often quoted by the great moralist St. Alphonsus Ligouri – tell us that “ … in order to conserve life, one is not bound to use all possible remedies, even extraordinary ones, really choice medicine, costly foods, a transfer to more healthful territory, so that he will live longer: he is not held to give over all his wealth in order to avoid death …”.[more detailed teachings in the history of the tradition]
(the “means” refer to the specific therapy or intervention that is being proposed)
Reasonable Hope of Benefit
Proportionate According to Status
Reasonably Simple Means
So the Church summarizes this in # 56 of the Ethical & Religious Directives – “Proportionate means are those that in the judgment of the patient offer a reasonable hope of benefit and do not entail an excessive burden or impose excessive expense on the family or the community.”
a Certain Impossibility Factor
Severe Dread (vehemens horror)
So # 57 of the Ethical & Religious Directives – “Disproportionate means are those that in the patient’s judgment do not offer a reasonable hope of benefit or entail an excessive burden, or impose excessive expense on the family or the community.”
The teaching Iura et Bona tells us that [refusing extraordinary treatment] … should be considered an acceptance of the human condition, a wish to avoid the application of a medical procedure disproportionate to the results that can be expected, a desire not to impose excessive expense on the family or the community.
As we noted above, some of the things we consider in weighing burdens and benefits include …
Objective Component = risks, difficulty, suffering, costs, possibility of success, time of life, quality of life
Subjective Component = fear, anguish, physical or mental suffering, feelings of degradation, will to live, importance of time left
John Paul II, in an address to hospice workers in 1998, noted that “Both the artificial extension of human life and the hastening of death, although they stem from different principles, conceal the same assumption: the conviction that life and death are realities entrusted to human beings to be disposed of at will. It must be made clear again that life is a gift to be responsibly led in God’s sight.” JPII to Rennweg Hospice, 1998.
1. Your loved one has been in the icu/hospital longer than a few days and is not getting better. Things continue to get worse. More doctors and machines are coming in to the room …
2. Clarify the facts – diagnosis – prognosis … burdens – benefits. Will my loved one be cured? Will she get back to the way she was before this all started? What are the chances (not) of this? What is the best we can realistically – reasonably expect?
3. Seek counsel … family – friends – pastor.
4. Discuss – weigh – pray about all of this in the context of the person’s entire life – biological… psychological … social … spiritual … all the aspects of suffering now … the reasonable hope of benefits that will arise from that suffering.
Our response, then, to the person in need will involve family and friends (one of whom is durable power of attorney for health care) at the bedside talking with the doctors and other health care personnel (including chaplains) about the specific needs of the person and addressing those needs as best they can. As with much of the Christian drama, this is difficult, emotional work (ascesis) to which God is calling us.
Although many are concerned about doctors hastening death (euthanasia), it is the above described therapeutic obstinacy that is most commonly occurring in hospitals and clinics today, while intentionally causing death in any way happens rarely. A host of factors are at play here including the physician’s mechanistic approach as well as the patient and family’s denial of death and difficulty embracing the reality of the resurrection that will occur on the other side of the cross they are currently carrying. This leads to collusion between the physician and the dying person-family, each fighting to stave off the inevitable outcome.
We find ourselves in the middle of a situation in which modern medicine has inserted itself between the person and his natural Destiny and so de-humanized the person in the process. The natural process of our being re-born to eternal life has become medicalized. The person is being defined by power.
Why did Jesus spend the majority of his time with the sick, poor, children and sinners? What is he telling us by his embrace of the weakest and, from a materialist point of view, the most useless? Msgr. Luigi Giussani, founder of the Movement Communion and Liberation tells us that He is making clear to us the impossibility of their affirming themselves according to their own strength – because they are so weak and in need. In them is evident the greatness of the fact that human dignity has only one reason, the relationship with the Divine. Jesus does not look at us abstractly. He looks at us in our vertical relationship and within the situation (horizontal relationships). On our death bed all we will have will be our relationships.
We are constantly in need of being healed, even when cure is no longer possible. The communio response in these situations will involve the embrace of the suffering and mystery by both the patient and those surrounding him as he journeys to his Destiny. The second Eucharistic Prayer reminds us that Jesus’ death was “a death he freely accepted” ["and entered willingly into his Passion"]. We will, at a certain point, “freely accept” our death, as John Paul II taught us with his own death – his final encyclical. Much if not most of the medical therapeutic armamentarium will be discontinued and the person and family will be allowed to spend time together to do the work to which they are being called at this point in their lives.
[coda Our case study above (the 84 year old executive) is that of Pope John Paul II himself … When the doctors asked him if he wanted to go to the hospital he said “No … Let me go to my Father’s house.” He freely accepted his death, choosing to forego burdensome (disproportionate) therapies.]
Cronin, Daniel A. "The Moral Law in Regard to the Ordinary and Extraordinary Means of Conserving Life." In Conserving Human Life, ed. Russell E. Smith. pp. 3-148. Pope John XXIII Medical Moral Research and Educational Center. Braintree, MA. 1989. Written in 1956, Cronin had no ideological ax to grind, no “side” to come down on (as many of us do today). With regard to the background, history and discussion of ordinary and extraordinary care decisions in the history of Catholic teaching, in a very real sense there are those who have read-pondered-wrestled with Cronin’s thesis and those who only know about it. The single best thing (along with experience) one can do to know and understand the tradition is to read Cronin’s thesis.
Iura et Bona – Declaration on Euthanasia. Congregation for the Doctrine of Faith.
Catechism of the Catholic Church – 2278