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IF I HAD TO CHOOSE BETWEEN HOSPICE CARE AND PALLIATIVE CARE…!
by Father Angelo
The question has been asked: “What can be done, vis a vis the growing acceptance and practice of palliative care in America?” I do not presume to know the best answer to this question, but I will give my personal insights and opinions, and my response must be treated as such.
I am someone who has worked on an “interdisciplinary team,” with a palliative care physician and his aides as part of that team, I do not pretend to be a physician or lawyer or legislator by any means. In answering this question, I will simply state what I would want for myself or one of my loved ones.
First of all, it is important to recognize that there is a great difference between hospice care and palliative care. In my dozen years of working closely with dying patients, I have come to the personal conclusion that hospice teams do not have a negative agenda for patients under their care. If a patient seems to be terminal or in his/her last weeks or days, there is a general attitude of wanting the patient to live and die as comfortably as possible. I have never personally witnessed any “agenda” by hospice teams of trying to expedite the inevitable.
In my one year of working daily on an interdisciplinary team, which included a palliative team with palliative physician, I soon became aware that there was a strong agenda of pushing for a quicker death. In pushing for a quicker death, there was always the emphasis on “comfort care” and “letting nature take its course.” By “letting nature take its course,” what was meant was really this:
1- no more treatments to prevent infections;
2- removal of nutrition and hydration;
3- no more treatments that had the goal of finding a cure or were conducive to promoting the patients overall health. The primary medical treatment used by the palliative team I worked with was the administration of pain killers. Palliative teams which my chaplain friends at other hospitals have worked with have told me that the primary medical treatment they observed was the administration of pain killers.
Many was the time that a palliative physician or aid said something to me like: “The family chose to keep the patient on nutrition and hydration. They don’t realize that one ounce of nutrition can unnecessarily prolong life another couple of weeks. If only families would be more informed, and realize that all this money is being spent for prolongation of miserable existence and not life, they would withhold this kind of treatment and just let nature take its course.”
In sum, I have told my family members, and my medical power of attorney, to forbid a palliative care team from treating me. My general experience has been that primary doctors will make sure that a patient is kept as comfortable as possible, even before death, without a strong agenda of pushing for expedited death. If more patients keep palliative teams away, then more and more palliative teams and their hospitals will lose business and then seek a more moral way to practice medicine. This is the solution I have chosen for myself, I do not pretend to know that this is the best solution, it is only my solution for myself and those who are nearest and dearest to me.
ABYSSUS ABYSSUM INVOCAT / DEEP CALLS TO DEEP 
IF I HAD TO CHOOSE BETWEEN HOSPICE CARE AND PALLIATIVE CARE…!
Response: Fr. Angelo is well-intentioned and desirous of helping others make good end-of-life choices that are consistent with the Church’s teaching on human dignity, Christian autonomy and the principle of elective extraordinary means. However, his post is misleading and potentially harmful to those individuals he intends to help.
Both hospice care and palliative care can be and are sometimes inappropriately and unethically used to hasten patients’ deaths. The June 2013 issue of “Ethics and Medics” contains an essay written by colleagues and myself which is a summary description of stealth euthanasia. Stealth euthanasia is any process by which death is hastened in a clandestine manner.
Let’s consider current hospice care in the United States. Some hospices and health care professionals—knowingly or not—participate in stealth euthanasia. Practices include standard orders for the use of opioids (morphine) for all patients once enrolled in hospice, even if they are not suffering symptoms which opioids treat, e.g. pain and shortness of breath. At times, inappropriate dosages are used – dosages well beyond those necessary to control symptoms, causing the patient to die more quickly than would occur naturally. This is either due to health care professionals’ willful intention—i.e. intending the patient’s death—or by their (unacceptable) ignorance concerning the proper use of these drugs which results in the patient’s death. Another practice that is employed to hasten death is sedation accompanied by withdrawal of food and fluids. The point is that not all hospices are authentically pro-life. One cannot assume that a particular hospice in our secular culture accepts the Christian/Catholic teaching of the sanctity of all innocent human life and, correlatively, of the intrinsic evil of euthanasia.
Regarding palliative care, Father Angelo accuses it, essentially, of practicing stealth euthanasia, as described above. Admittedly, there are abuses in palliative care as there are abuses in hospice care. This is all the more reason for vigilance in choosing those hospices and palliative care programs that are sensitive to and respect the value of life and the culture of life.
Father Angelo states, “‘Palliative Care’ pretends to relieve the burden of suffering that fate has placed on people’s shoulders.” This is a gross caricature of basic palliative care. Palliative care was defined by the Center to Advance Palliative Care in 2011 as “specialized medical care for people with serious illness. This type of care is focused on providing patients with relief from the symptoms, pain, and stress of a serious illness – whatever the diagnosis. The goal is to improve quality of life for both the patient and the family. Palliative care … is appropriate at any age and at any stage in serious illness, and can be provided together with curative treatment.” Additionally, palliative care is a new medical specialty that works hard to assess the patient in holistic terms using eight domains: medical, physical, social, psychological, spiritual, cultural, ethical and legal aspects of medical care.
It is a team-approach for care to ensure patient’s goals are met and their symptoms well-managed and, as defined, is concurrent with disease-specific “curative treatment.” A noteworthy landmark palliative care study by JS Temel (New England Journal of Medicine, August 2010) demonstrated that early palliative care in patients with non-small cell lung cancer who were also receiving standard chemotherapy (compared to patients who got only chemotherapy but did not receive palliative care) led to significant improvement in self-assessed quality of life and less depression. Also, these patients had less aggressive therapy at the end of life yet LIVED APPROXIMATELY 2 MONTHS LONGER. Authentic palliative care has the potential to improve overall survival and reduce patients’ suffering, i.e. improve what the patients assessed to be a better quality of life.
I’m not sure what kind of palliative care teams Father is referring to, but it is not genuine palliative care if there is a “strong agenda of pushing for a quicker death.” Sometimes there is a recognition that the disease is no longer curable and, in those cases, following patient’s wishes, withdrawal of therapies may occur. If this is done according to the Catholic Church’s long-standing teaching, using the principle of ordinary and extraordinary means to preserve life, the patient or surrogate may request the removal of extraordinary means.
A comment about “quality of life” is also in order here. The judgment – explicitly stated or implicitly assumed – that someone may be better off dead is a judgment concerning the quality of life. Christians, however, recognize that life is pure gift and may never be qualified by any observer. No one may discard this gift as being somehow defective. Even the patient himself cannot morally decide to have his life ended because he considers his life not worth living.
There is a clear distinction between a quality of life judgment and a quality of treatment judgment. For example, (and the Church agrees with this) the person who happens to be the patient may determine the QUALITY of a particular treatment meant to preserve life. For example, the ventilator used in a patient with ALS may, at some point, become extraordinary. That is to say, when a particular treatment has become burdensome and beyond any proportional benefit to that person, he may decide to forgo that specific treatment. This is the case even if it is foreseen that his death will ensue. In this case, the patient—and the patient alone (or surrogate)—is determining that the quality of a particular treatment is of no benefit to him or is too burdensome for him to bear. Note that this is not someone determining life has little or no quality, but rather that a treatment to sustain life has inadequate quality. As such, the treatment may be stopped. The intention, then, of the person/patient is to stop a burdensome treatment; it is not an intention to die. There is a very big difference.
For both hospice and palliative care providers, there is no justification for making quality of life determinations about their patients’ lives. This is an encroachment upon a personal experience that for many Christians is also sacred.
In a culture of death, where the sanctity and dignity of life are seen as extrinsic qualities, it is not surprising to find a growing number of health care professionals (and patients too) who speak about and use quality of life arguments as a tool to intend death. It is only a culture of life that enables the recognition of life’s inherent dignity and holiness, as pure gift from its Creator. Life derives it value from God, and not from any government, society or “enlightened” group of people. As such, there is no entity or person who ever has a right to dispose of any innocent human life in the name of quality or compassion, and certainly not in the name of economics.
There is so much more that could be written. My primary purpose in addressing this misleading post is this: I do not want others to dismiss palliative care without hearing, from someone who practices it, what it really is and its potential benefits. In fairness to Father Angelo, his experience of palliative care that formed his opinion may have been one of “stealth euthanasia” which has been described above and ascribed to certain types of hospice care and palliative care. For our discussion, however, it is important to correct any misconception about the mission of authentic palliative care. I wrote this response for the benefit of patients who might otherwise miss an opportunity for genuine palliative care while they are still getting therapy for their disease. Refusal of palliative care, based on Father Angelo’s description of it, may result in greater suffering or needless suffering. Furthermore, considering Temel’s study, good palliative care has the potential to improve one’s chances of living longer.
Finally, if patients and their surrogates believe Father Angelo’s post, they may choose to enter hospice unaware of the risk of stealth euthanasia or what another important writer on this topic, Wesley Smith, calls “Forced Exit” (his book by the same title). I would advise people to investigate the practices of any hospice or palliative care program before enrolling in it in order to assess whether it adheres to a “quality of life” or a “sanctity of life” ethic.
Ralph A. Capone, MD, FACP
Board Certified Hospice and Palliative Medicine
Adjunct Faculty St Vincent College in Catholic Bioethics
How does one send a response to this post? — Julie Grimstad, Chair, Pro-life Healthcare Alliance
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I chose “HOSPICE CARE” my ‘SHELTIE’S go to visit “HOSPICE” patients 3 times a month, and the patients LOVE them..
Who is the writer of this column? There are several serious misconceptions. Barb
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