This document discusses patient autonomy and physician obligations at end of life. It examines two case studies of young women with terminal illnesses who are maintaining autonomy in different ways. Brittany Maynard is moving to Oregon to pursue physician assisted suicide, while Lauren Hill focuses on raising cancer awareness and playing basketball. The document argues that physicians should support patient choices to die with dignity as long as they are competent. It also stresses the importance of advance care planning and conversations with loved ones to ensure wishes are followed.

1. AUTONOMY
Patient Rights and Physician Obligations in End of
Life Decision Making
Sretta Clark
Healthcare OrganizationandManagement

2. Abstract:
Millions of health care dollars have been spent to advance medical technology in the hopes of
improving our ability to prevent, treat, and cure a wide array of illnesses. To the credit of
scientists spanning the globe, this mission has been and continues to be accomplished on a daily
basis. Robotic-assisted surgeries, gene therapy, and minimally invasive high-quality diagnostic
imaging have, to be certain, saved an untold number of patients. These individuals make a
complete recovery and go on the live happy, healthy, and productive lives. This paper is not
interested in that population.
To the dismay of many, the same advances in medical technology have not translated into an
extension of life, but an extension only in one’s mere existence. Having been placed on
mechanical ventilation, with feeding tube inserted securely, and renal dialysis flowing, the
patient’s life is declared “saved”. The family is relieved of its guilt, the healthcare facility
exhales a sigh of relief as the looming lawsuit fades, but there is still the matter of the patient.
The star of this medical side-show is now incontinent of bowel and bladder, unable to
communicate even basic needs, and is at risk for developing a host of conditions attributed to his
or her new “state of existence”, including bed sores, contractures and a multitude of infections.
Furthermore, the patient will often still die. This scenario is meant to be depicted as the worst
possible circumstance, as for many of us healthy individuals, it is this scenario which plays on
our darkest fears. This is the population of interest to me, this is the concern of my research.
I will explore the traditional methods used by individuals to maintain their autonomy with
regards to healthcare treatment and life-prolonging tactics; the struggle of the healthcare provider
to balance beneficence with non-maleficence in delivering care; and what I feel to be most

3. important, the partnership between the patient and the healthcare provider in plotting a course of
action, when impending death becomes a reality. I will also address two current cases of women
facing terminal illnesses and the method each has chosen to deal with their diagnosis.
Keywords: Autonomy, Beneficence, Non-maleficence, Paternalism, Advance Care Planning,
Hospice, Physician Assisted Suicide

4. Introduction
“The biological life of the human being has no intrinsic value, but that its value depends on
extrinsic factors [such as quality of life, understood in the sense of reduction of suffering with
respect to pleasure, or the possession of autonomy], it is considered more dignified to die than to
live in some circumstances. It must not be forgotten that it is not a matter of only a subjective
relationship: the patient does not only put forward the request to refuse medical treatment, but
also asks for the physician’s collaboration to help and assist his decision to die”. (Palazzani,
2004) To what extent does the patient have these rights and to what extent does the doctor have
corresponding obligations?
Patient Rights
Autonomy is “the ability of an individual to exercise his or her rights, have choices respected,
remain independent and be involved in his or her own care decision”. (The Free Dictionary,
2010) When entering a healthcare facility, we are faced with handing over the bulk of our
autonomous decisions to the well-meaning staff, entrusted to care for us. Often this is because
our physical condition at the time dictates such a submissive role. Our very personhood can
quickly become jeopardized. With this in mind, it is essential that we make our desires regarding
our health care known well in advance of finding ourselves in such a situation. In 1990, the
federal government recognized this important right and drafted legislation to address the matter.
The Patient Right to Self-Determination Act of 1990 requires that individuals be informed, upon
admission to any health care institution, about their right to refuse any medical or surgical
treatment and to create related advanced health care directives. Such advanced directives are
intended to be used in the event that the individual becomes incapacitated. Traditionally,

5. advanced directives have included things such as do not resuscitate (DNR) orders, the use of
artificial feeding and hydration, as well as the option of appointing an individual to act as a
healthcare proxy decision maker should the individual be unable to communicate his or her
wishes. (Congress, 1990)
Physician Obligation
“I will keep them from harm and injustice…I will neither give a deadly drug to anybody who
asks for it, nor will I make suggestion to this effect”. (Edelstein, 1943) Upon completion of
medical training, each physician and physician assistant, engages in a rite of passage; the taking
of the Hippocratic Oath. This oath is widely believed to date back to the 5th century, and requires
one to swear upon a multitude of healing gods, to uphold ethical standards of practice. Though
revised versions exist today, the intent remains the same; to do good (beneficence) and to avoid
doing harm (non-maleficence).
On its face, making such a commitment may seem fairly cut and dry, but in fact, nothing could
be farther from the truth. Certainly it is the intent of all physicians to use their knowledge to heal,
and more often than not, this is the outcome of their prescribed course of treatment, perhaps
leading people to believe that they too are one of those “healing gods”. Physicians do in fact hold
the lives of their patients in their hands. The duty and obligation thrust upon them in these
moments, must be, at times unthinkable. Because they are not gods, they are unable to save all
life, nor should they. In fact, many times, it is their role to assist the patient in experiencing a
“good death”, but this too can be a fine line to walk. To truly practice beneficence, the physician
must support and assist the patient, to whatever degree possible, “to exercise his or her rights,
have choice respected, remain independent and be involved in his or her own care decisions”.
(The Free Dictionary, 2010)

6. When Things fail to go as Planned
From the moment we arrive on this Earth, we begin to die. Of course, we do not think in these
terms, nor should we, as it would rob us of the joy of living. We have a vague expectation that
we will grow up, have a career, perhaps get married and start a family, retire early and enjoy our
senior years in a manner fit for an AARP commercial and for many, some variation of this is
correct. Sadly, this is not a guarantee. Two examples of “things failing to go as planned” are in
the news today; that of Brittany Maynard, age 29 and Lauren Hill, age 19. Both young women,
both dying from terminal brain cancer, and both making all possible attempts to maintain their
autonomy throughout the process, in hopes of dying a “good death”.
Brittany Maynard
Brittany grew up, began a career in education, married the man of her dreams in September of
2012, and began plans to start a family. On January 2, 2014, after suffering from what had
initially been diagnosed as migraine headaches, Brittany was told she had a brain tumor and was
given a prognosis of three to five years. This was later revised to a more devastating prognosis of
six months. Brittany chose to maintain her autonomy by relocating with her family to Oregon,
where she plans to pursue the option of physician assisted suicide. In an interview with People
magazine, Brittany explains, “I don’t want to die, but I am dying. My Cancer is going to kill me,
and it’s a terrible, terrible way to die. So to be able to die with my family with me, to have
control of my own mind, which I would stand to lose – to go with dignity is less terrifying. When
I look into both options I have to die, I feel this is far more humane.” Thus, on November 1,
2014, surrounded by her loved ones, she will ingest 100 capsules of secobarbital and fall into an
“irreversible sleep”. (Egan, 2014)

7. “On October 27, 1997 Oregon enacted the Death with Dignity Act which allows terminally-ill
Oregonians to end their lives through the voluntary self-administration of lethal medications,
expressly prescribed by a physician for the purpose”. There are however a multitude of safety
mechanisms built into this process. To begin with, the individual must be at least 18 years of age,
and able to make and communicate health care decisions. She must have been diagnosed with a
terminal illness, having a prognosis of not greater than six months and these facts must be
confirmed by two physicians. She must then make two separate oral and one written request for
assistance with ending her life. At this point, the physician must make a final determination as to
the individual’s competency, as well as advise her of other available options, including palliative
care, before actually providing a prescription for the lethal mediation. The physician may be
present when the medication is ingested, but may not participate in the administration of the
medication. Using this alternative affords the patient the ultimate level of autonomy with regards
to experiencing what she feels to be a “good death”. Still yet, the physician holds the power and
can refuse the request if he feels the patient is not competent to make such a decision. (Oregon
Health Authority) One could easily say that, by its very nature, this Act violates the Hippocratic
Oath. However, as Brittany Maynard herself explained in the previously discussed case, she is
going to die. It is not the physician who is taking her life, but the cancer. The physician is
however, in my summation, providing her with the final act of care in allowing her suffering to
end, and furthermore, allowing a dignified and peaceful exit from this life.
Lauren Hill
Lauren noticed something wasn’t right while practicing basketball. “I wasn’t playing normally. I
was dizzy and disoriented and wobbling around and not catching the ball”. In the fall of 2013,
Lauren was diagnosed with diffuse intrinsic pontine glioma, a fast growing form of brain cancer

8. found predominately in children. Though her prognosis was less than two years, her first concern
was whether or not she could continue playing basketball. (Lauren Hill Cancer, 2014)
Lauren dreamed of playing in college and on November 2, the dream became reality. The game,
originally set to be played at Hiram College, was moved to Xavier’s Cintas Center to
accommodate a sold out crowd of ten thousand fans. She has chosen to use what time remains to
raise awareness and to raise money for research into this harsh diagnosis. Her physician
prescribes steroids to slow the progression of the disease; something that causes facial swelling,
abdominal and joint pain and migraines. In an interview with Pat Daugherty of USA Today,
Lauren said of her death, “I just hope I’m not in pain. My wish is to die while I’m sleeping. The
pain that everybody else will feel, that will be the worst pain.” (Daugherty, 2014)
Lauren’s doctors do not know if she has days, weeks, or months left. They are respecting her
autonomous decision to fight by managing her condition with medications to slow its progress
and mitigate her pain. Is the physician upholding his Hippocratic Oath in allowing this young
woman to continuously put undue stress on her already weakened body? It would be easy to see
how paternalism, “the interacting with a patient as a father would a child…which may limit the
autonomy or be contrary to the patient’s wishes” (The Free Dictionary, 2010) might be tempting.
What is important about these two cases is that each woman is actively choosing how to spend
their remaining time in the face of terminal illnesses. Though they have each defined that
differently, the outcome is the same. They are afforded respect and dignity by their treating
health care providers. It is this final relationship that I believe is most important between patient
and physician and one that should be planned for much in advance of its need.

9. Advanced Care Planning
Advance care planning is process that involves preparing for future medical decisions in the
hypothetical event that individuals are no longer able to speak for themselves when those
decisions need to be made. In the course of planning, several important questions should be
addressed: What is most important to the individual and why? Perhaps it is to make the most of
everyday until death arrives; perhaps it is to thwart death’s sting and determine for oneself when
the journey shall end. What kind of medical conditions they would want treated? While the
patient may wish to forgo futile treatments for the fatal condition they face, treatment of
secondary infections and unrelated illnesses may be addressed. What kind of medical treatments
they are willing to endure? Chemotherapy and radiation can provide extra weeks and sometimes
months, but come with a multitude of less than desirable side effects. Who they would want to
serve as their spokesperson if and when they could not make their own medical decisions? The
answer may not necessarily be a loved one, as some would feel such a responsibility would place
an undue burden on the individual who is already facing a great loss. (Levi & Green, 2010)
There are several avenues that one can access to convey his or her wishes with regards to
receiving or withholding medical treatment. The first instrument that comes to mind is perhaps
the DNR, do not resuscitate order. This is a medical order written by a physician, upon request of
the patient or his or her healthcare proxy, which instructs healthcare providers to withhold CPR
in the event that either breathing stops or the heart stops beating. It should be stressed that this
order only applies to CPR and not to any other medical treatments or procedures. Some key
points made by (Tsang, 2010) are: 1) DNR orders should always be followed by level of care
order; 2) DNR orders alone only cover very occasional clinical scenarios; 3) DNR orders alone
can impede further discussion on medico-ethical issues and 4) [a] DNR order alone is sometimes

10. interpreted as palliative. With these key points in mind, it is prudent to further define what
specific types of treatment one wishes to or not to have in the event of incapacitation or a
vegetative state. This can be outlined in an advanced directive known as a living will. These
treatments include artificial nutrition and hydration, the use of artificial respiration and the
initiation of dialysis, to name a few. It is important to note that the living will only takes effect if
the individual becomes incapacitated and absent that condition, the individual will continue to be
consulted about all medical treatments. Creating an advanced directive is certainly a step in the
right direction, but studies have shown that this may also not be enough. “Advanced directives
are not as effective in a clinical setting as the individuals who wrote them may have hoped they
would be…[they] are intended to provide an individual a means of expressing his or her wishes
for medical treatment when he or she is no longer able to make those wishes known due to
incapacity. A 2005 study showed that only five to fifteen percent of individuals in the United
States have implemented an advance directive and most individuals have not discussed advance
directives or end-of-life planning with their physicians or, more importantly, with their families.”
(Casey & Walker, 2011) In both the case of Brittany and Lauren, family has played an integral
part in assisting these ladies with facing their impending deaths. Brittany’s parents relocated to
Oregon with her and will be present at the time of her death. Lauren’s parents assist her with
pursuing her personal goal of raising awareness and money for much needed research into
pediatric brain cancers and to continue her passion for playing basketball. Regardless of who the
significant others may be in one’s life, it is necessary to engage in meaningful conversation about
concerns, hopes and fears, as well as specifically how the individual wishes to proceed with the
dying process. This act alone can relieve guilt and stress felt by loved ones in the final days. The
appointment of a durable medical power of attorney or healthcare proxy may be considered as

11. well. Again, the role of this selected individual is to ensure that your wishes are carried out in the
event that you are no longer able to act on your own.
End-of-Life Options: Hospice and more aggressive measures
“Excellent palliative care should be the standard of care for all dying patients, and no patient
should be medically assisted with a hastened death because he or she is not receiving this
standard of care. Unfortunately only about 30% of dying patients ever make it to hospice, and for
some of that 30% the referral is made in the last hours or days of life”. (Quill, 2012) Hospice is
more accurately, a “concept” of care. Its goal is to provide comfort and care to a patient and their
family members when all curative approaches have failed. In the strictest of definitions hospice
neither prolongs life nor hastens death, however effectively managing pain is paramount. A great
deal of focus is also on providing social, emotional, and spiritual support to both the individual
and his or her family as death approaches. Along with this, the patient has the right to stop
potentially life-sustaining therapies, if they have not already been stopped prior to the start of
hospice.
There are also more aggressive measures that can and are taken, sometimes in the shadows of
much scrutiny. The first of which is voluntarily stopping eating and drinking. This requires much
resolve on the part of the patient, as hunger and thirst mechanisms often remain intact. If a
patient does choose to pursue this path, death generally occurs within one to two weeks, with a
rapid decline in cognition from dehydration and approaching death. A second tactic is the
acceleration of opioids for pain and dyspnea by employing the “rule of double effect”. This rule
has four distinct points: 1) relieving severe pain is a legitimate goal of treatment with opioids; 2)
one can foresee the risk of sedation or respiratory depression if doses have to be rapidly
increased, but it is not the intent of the treatment; 3) the symptom must be proportionately severe

12. to warrant the risk; and 4) death cannot be intended as a means to relieve the patient’s symptoms.
Basically what is being said is that the individual is experiencing a level of pain that cannot be
controlled with traditional dosing standards and in light of this, and in an attempt to manage that
pain, the doses will be increased to a level that will mitigate the pain, with the understanding that
this act could lead to an unintentional hastened death. Similarly, the patient and physician may
agree on palliative sedation to unconsciousness if they feel that lower levels of sedation will fail
to manage pain. This approach endures controversy because unconsciousness is intended.
Typically, all artificial hydration and nutrition are simultaneously withheld. Though
controversial, in 1997, the Supreme Court cited the practice of palliative sedation to
unconsciousness as acceptable. Finally, there is the option of physician assisted suicide, [as
discussed in the case of Brittany Maynard and which is currently legal in only a handful of
states]. (Quill, 2012)
The options presented are not to be considered “all-inclusive” and in fact many more may exist
based on prognosis and diagnosis. To this end, it is essential that individuals work towards a
relationship with his or her healthcare provider, based on mutual respect and trust. One would
assume that it would be the physician who might initiate such pivotal conversation, but for many
reasons, this may not be the case.
Preparing Future Physicians
There are rapidly increasing demands on physicians to be involved in life-ending decisions. This
is largely due to a steady increase in aging population and high prevalence of chronic illnesses,
but I would suggest that this is also due, in part, to a shift in social consciousness towards
increased autonomy among the younger population. Engaging in conversations regarding end of
life care can be emotionally and ethically challenging for medical practitioners. In addition it is

13. clear however, that such conversations are becoming an integral part of medical practice. In a
study undertaken by (De Leo, Hawgood, & Ide, 2012), medical students expressed a high level
of desire for education in topics such as quality of life and quality of death, right-to-die issues,
and physician-assisted suicide. Additionally, 90% of these students agreed that physicians should
actively participate in life-ending decisions, however their views on actual involvement in life-
ending decisions varied greatly. “It is very important that medical students receive an education
that provides guidelines for medical ethics, facilitates student self-awareness of their own
personal values and provides skills to manage conflicts between their own beliefs and public
opinion”.
Conclusion
Arguably, the alleviation of suffering, in all its forms, is not only in the best interest of the
patient, but is in fact a primary duty of the physician. To this end, it is within reason to anticipate
that assistance with dying could become necessary and perhaps reside within the duty of the
physician to provide. To act in the best interest of the patient, beneficence dictates that the
actions of the doctor must be aimed to bring about benefit while non-maleficence mandates that
the doctor not carry out treatment that is likely to cause overall harm to the patient. These
conflict and would require a redefining of what constitutes “acting in the best interest”. (Frost,
Sinha, & Gilbert, 2014)

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