Running Head: COMPASSIONATE CARE: PROTECTING PATIENT AUTONOMY

Compassionate Care:
Protecting Patient Autonomy and Transforming Suffering
Jane Riley
Temple University

COMPASSIONATE CARE: PROTECTING PATIENT AUTONOMY

Abstract
End-of-life planning is an important part of our health care system. It allows patients to choose
how they will be treated during the last phase of their life. The healthcare proxy plays a huge role
in maintaining the effectiveness of the living will and advance directive. It is the nurses
responsibility to create an environment in which open discussion of end-of-life care can occur so
that all parties can reach an understanding about the patients wishes. This process allows the
patient to confront their feeling about death and consider their own mortality. This can be done
through frank discussion of the patients health, support of the health care proxy, and
compassionate care.
Keywords: health care proxy, patient autonomy, end-of-life planning, compassion, death

COMPASSIONATE CARE: PROTECTING PATIENT AUTONOMY

Compassionate Care:
Protecting Patient Autonomy and Transforming Suffering
In a system that is often forced to accept and anticipate the worst case scenario, the role
of nurse has become increasingly important in supporting patients and those who they have
appointed in making difficult decisions and dealing with the ramifications and consequences of
these choices. Patients come into the clinical area as foreigners trying to barter with a currency
that has no price, their wellbeing. This precious currency is trusted to us and to those they have
chosen, such as their health care proxies. Patients and their health care proxies face a variety of
quandaries that have a lasting impact on themselves and all those who love them. It is our job as
nurses to provide educational and emotional support, and to lay out the options in a language that
they can understand so that they can make the best decision for their future selves. It is through a
respect for patients autonomy that the nursing profession must operate in order to take
compassionate care of the client and their families. With this in mind, nurses can help these
weary travelers pass on as they wish, in comfort and in peace.
The prospect of death is inevitable; we cannot run, hide or avoid it. Death comes for us
and all we love with no discrimination or second thought.
What we know is that obviously we are all going to die, but how we die is
really important, obviously not just to us, but also to how that features in the lives
of all the people who live on afterwards. How we die lives on in the minds of
everybody who survives us (Saul, 2011, p.1).
Dying is process that nurses become quite intimate with. It is part of the job, to usher those
whom we could not help into the next phase when their time comes. Before that though, we

COMPASSIONATE CARE: PROTECTING PATIENT AUTONOMY

furiously race against the speed of the Reapers scythe, attempting to put off what we all know
will come eventually. We work to save lives for minutes, hours and days, and even years. But
every patient has a breaking point, and at some point they come to say that it is enough. It is not
our role to say when that is, but that of the patient and those who speak for them. What we as
nurses are responsible for though is to guide them gently through the entirety of this process.
The fact is that many of us will die in a hospital due to the increase of conditions that
plague our older generations. Innovative medical technologies enable the sick and dying to
extend the length, though not necessarily the quality of their lives, (Carr & Khodyakov, 2007, p.
15). It is the miracle of medicine that has kept people alive longer but has come up short on
keeping them healthier. Frailty's an inevitable part of aging, (Saul, 2011, p. 1). It is just a
function of the body to begin to slow and decompensate as it ages. What you die of is
increasing organ failure, with your respiratory, cardiac, [and] renal organs packing up. Each of
these would be an admission to an acute care hospital, at the end of which, or at some point
during which, somebody says, enough is enough, and we stop," (Saul, 2011, p.1). We stop racing
and attempting to beat the clock; we accept the nature of things. The thing is though, that at
least six out of 10 people will die in this form, which is the dwindling of capacity with
increasing frailty, and increasing frailty is in fact the main thing that people die of now, and
the last few years, or the last year of your life is spent with a great deal of disability, (Saul,
2011, p. 2). It is this kind of inevitable that we as the nurse should help our clients to prepare for
through self-reflection, carful end-of-life planning and uncomfortable honest discussions with
family members.
It is imperative that patients understand and take the time to confront their own mortality.
This allows for us to begin the process of planning. "Designating a health care agent gives us all

COMPASSIONATE CARE: PROTECTING PATIENT AUTONOMY

the opportunity to confront our mortality and to determine who among our friends and relatives
we want to make treatment decisions on our behalf when we are unable to make them ourselves,"
(Quill, 1991, p. 6). This step requires the client to picture them self at the time of their impending
demise, in a state in which they cannot make or verbalize decisions for them self. This is not an
easy feat for anyone and is often met with resistance and fear. This line from the Mahabharata,
the great Indian epic perfectly reflects the feelings of avoidance that many of our clients
experience. The story goes what is the most wondrous thing in the world, Yudhisthira?' And
Yudhisthira replied, 'The most wondrous thing in the world is that all around us people can be
dying and we don't realize it can happen to us, (Halifax, 2010, p. 4). It is this out right denial
that, first of all, helps us to continue to be productive members of our society and to move on
from the devastation of deaths that are close to us. It also, though, keeps us from confronting an
absolute truth about our own lives. "The United Sates has been described as a death-denying
society, where adults will not broach the topic of death unless they are directly confronted with
it," (Carr & Khodyakov, 2007, p. 5). In this case, the role of the nurse, and other members of the
interdisciplinary health care team, is to help the patient self-reflect and consider the unfortunate
possibilities of death. It is with straight forward language that we can begin to confront our
clients with these ideas so that they can be better prepared for the future.
What is important in this forward focused planning are the values, feelings, and wants of
the patient. It is this ideal that Congress had in mind when in 1990 they passed the Patient Self
Determination Act, which requires that all government-funded hospitals and nursing homes
give patients an opportunity to complete an advance directive upon admission [This] initiative
[was] intended to spare the dying and their family members from the distress during the final
days of the patient's life," (Carr & Khodyakov, 2007, p. 2). The advance directive allows the

COMPASSIONATE CARE: PROTECTING PATIENT AUTONOMY

patient to put into words in a formal format what kind of care they would like to have at the end
of their life should they be unable to communicate this to their health care provider. It consists of
two separate parts the first being the living will. The living will is a formal document specifying
the medical treatment one would like to receive in the event the he or she is incapacitated, (Carr
& Khodyakov, 2007, p. 1). Taking this step toward future planning is immensely important but
unfortunately can often be misinterpreted. Barriers to this type of communication may result due
to many reasons including: the content may be unclear, the preferences stated in the document
may not be relevant to the patient's current condition, the physician may not know or have access
to the document at a critical decision making moment, and family members may not know its
content or may not know how to translate the patient's preferences into specific treatment
decisions," (Carr & Khodyakov, 2007, p. 2).

In addition to this, they can often become

nonbinding because of the specificity of the situation or circumstances listed within the living
will. Most living wills begin with the statement, 'If I have a terminal condition, then...' This
statement requires a physician to evaluate whether the patient' condition is terminal. Until that
determination has been made, the content of the living will does not hold, (Carr & Khodyakov,
2007, p. 3). These pose problems to the efficiency and veracity of this document making this
attempt at security feel futile and insurmountable. It is at this point that the second part of the
Patient Self Determination Act begins to pick up the slack.
In order to combat the uncertainty of what is to come and the multitude of different
scenarios that could play out, the health care proxy helps to alleviate the vastness of this
endeavor. "Durable power of attorney for health care (DPAHC) [is] someone who will make
decisions about [the patients] health care in the event that they become unable to do so, " (Carr
& Khodyakov, 2007, p. 3). This document that appoints the Durable Power of Attorney for

COMPASSIONATE CARE: PROTECTING PATIENT AUTONOMY

Health Care (DPAHC) (or also termed: health care proxy, health care surrogate, health care
decision maker, or health care agent), allows the client to plan for the unknown by focusing on
the values they hold dear. The assumption is that the person whom they choose will have an indepth knowledge of the patient's wishes, (Carr & Khodyakov, 2007, p. 3), although this is not
always the case. It takes courage to have an honest discussion between the patient and their
proxy about what would happen and what they would want. It is very difficult to think about
what we would do without those we care most about to guide us, let alone make decisions for
them that has lasting and potentially permanent consequences. Most individuals who make a
life-sustaining treatment decision on behalf of a loved one feel inadequately prepared to do so.
Surrogates who have made such decisions describe their experiences as life-altering events,"
(Buckey, 2007, p. 6). The fact of the matter is that these choices and decisions are life altering.
They directly affect the life and wellbeing of a loved one. By speaking to them about what they
would want in different scenarios, the proxy can better make the decision the patient would have.
Nurses should [urge] surrogates to talk with patients 'ahead of time,' to obtain and clarify factual
information from patients early, at the time patients are admitted into critical care, thereby
supporting a more comprehensive surrogate knowledge base for decision making should a
treatment decision be required," (Buckey, 2007, p. 2).
It is also imperative that we as nurses, and the entirety of the interdisciplinary health care
team, are supportive and honest with the proxy about the clinical status of their loved one.
Surrogates formulate decisions based on the perception of patients' current medical status,
together with their knowledge of patient preferences'; yet, knowledge of patient preferences
alone has been insufficient support for surrogate action," (Buckey, 2007, p. 2). This makes it

COMPASSIONATE CARE: PROTECTING PATIENT AUTONOMY

only more important that the nurse works to improve and maintain communication with the rest
of the team and with the family of the patient.
Not only should we, as nurses, be expected to open lines of communication but also to
help act as a support for the health care proxy during this period of discussion and decision
making. "Surrogates are willing to take on the decision-making role on a loved-one's behalf, they
experience discomfort in it, often seeking support from multiple sources: patients, immediate and
extended family members, physicians, nurses, and auxiliary health care professionals," (Buckey,
2007, p. 5). This is especially true during times when the patient may be in active grieving or
experiencing pre-death grief. In a study done looking at factors that affect decisions on life
sustain treatments a respondent stated that making the treatment decision was the easy part; the
most difficult part of her surrogacy "is watching them go, even though I knew it was what she
wanted and she was ready, (Buckey, 2007, p. 5). This beautifully demonstrates the pain of
losing a loved one and the simultaneous acceptance of the clients wishes and peaceful passing.
Proxies can also experience a preemptive form of grief. First, they grieve the loss of the
patients' person-hood before their actual bodily death, which has been called anticipatory
grief Finally, there is the loss experienced when the patient ultimately dies (Kiely, 2008, p.
6). This is due to the gradually [loss of] the essence of their loved one, (Kiely, 2008, p. 5) and
the decision to withdraw care. During this time in the proxys role they need support from their
family, loved ones, and friends. They also may turn to the nurse for validation and reassurance
for the choice they had been asked to make. This type of responsibility weighs heavily on the
shoulders of its bearer making it an opportunity for compassion and empathy to find itself center
stage.

COMPASSIONATE CARE: PROTECTING PATIENT AUTONOMY

Compassion is the corner stone of our practice as nurses. We care for patients everyday
as part of our calling and vocation. Being a nurse is more than just having a job; it is an integral
part of who we are as people even when we step out of our scrubs. In a presentation she gave,
Joan Halifax talks about her experiences in a remote village in South East Asia setting up
palliative care clinics. I walked up to the bedside of an old woman who was breathing very
rapidly, fragile, obviously in the latter phase of active dying. I looked into her face. I looked into
the face of her son sitting next to her, and his face was just riven with grief and confusion,
(2010, p. 2). These are the patients and people we take care, not only those whom are ill and sick
but those who act as caregivers and decision makers for these people. We treat the whole unite,
not just the single client. As nurses we treat suffering, a symptom of being sick, sad, or scared.
"Compassion is comprised of that capacity to see clearly into the nature of suffering. It is that
ability to really stand strong and to recognize also that I'm not separate from this suffering. But
that is not enough, because compassion, which activates the motor cortex, means that we aspire,
we actually aspire to transform suffering. And if we're so blessed, we engage in activities that
transform suffering. But compassion has another component, and that component is really
essential. That component is that we cannot be attached to outcome." (Halifax, 2010, p. 4).
Nursing practice asks us to look at patient symptomology and the clinical picture in a holistic
sense, as to best treat the patient. As to transform what suffering they have into something else,
whether that be something more manageable or health itself. As medical professionals though,
we know that this cannot always be done. What we want to happen does not always line up with
the wishes of the patient or family or even the actuality of the events. It is the outcome that is out
of our control but is also something that should never discourage us from using compassionate
care.

COMPASSIONATE CARE: PROTECTING PATIENT AUTONOMY

Death is a scary thing. It makes the room feel a bit more grim and heart sit with a little
more weight. But with compassion we can help to families to give meaning to these painful
experiences and to help ease their suffering or try to transform it. We have the reach to transform
the way people are allowed to pass on. Nurses can help to nurture open conversation filled with
honesty and courage so that our clients can speak about what they want from their lives because
as Peter Saul said during his presentation on dying, "You matter because you are, and you matter
to the last moment of your life," (2011, p. 5). The patients autonomy should have the utmost
reverence during the last stages of life because how someone dies should be the last testament to
how they lived their life.

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COMPASSIONATE CARE: PROTECTING PATIENT AUTONOMY

References
Buckey, J. W. (2007). Factors affecting life-sustaining treatment decisions by health care
surrogates and proxies
Carr, D., & Khodyakov, D. (2007). Health care proxies: Whom do young old adults choose and
why? Journal of Health and Social Behavior, 48, 180-194.
doi:10.1177/002214650704800206
Halifax, J. (2010, December). Compassion and the true meaning of empathy. Retrieved February
22, 2016, from https://www.ted.com/talks/joan_halifax
Heyman, J. C. (2008). Social workers' and nurses' attitudes toward the health care proxy. Journal
of Social Work in End-of-Life & Palliative Care, 4(1), 57-74.
doi:10.1080/15524250802072211
Kiely, D. K., Prigerson, H., & Mitchell, S. L. (2008). Health care proxy grief symptoms before
the death of nursing home residents with advanced dementia. The American Journal of
Geriatric Psychiatry, 16(8), 664-673. doi:10.1097/JGP.0b013e3181784143
QUILL, T. (1991). the health-care proxy and the living will. New England Journal of Medicine,
325(12), 893-893.
Saul, P. (2011, November). Let's talk about dying. Retrieved February 22, 2016, from
https://www.ted.com/talks/peter_saul_let_s_talk_about_dying?language=en

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