Compassionately Managing Care
by Andrea Nathanson, R.N.
"Palliative" and "Care" are two words that may provoke fear and confusion in patients, their family members and loved ones. Palliative care is the compassionate care of a dying person by minimizing their suffering as they progress towards the end of life. Medically, this is achieved by helping dull the patient's pain through assorted pain- and symptom-management techniques. However, more than just physical comfort measures can ensure that the remaining days (or years) of a patient's life are comfortable. Here is some helpful information I share with clients in my work as a registered nurse and primary palliative case manager. It may help you deal with a palliative care client and his or her family and inform you on how to best bring closure to someone's life in a peaceful and positive manner.
The Stages of Palliative Care
Palliative care doesn't just start when a patient is bed-ridden and
near the end of life. Patients can receive treatment for various ailments
and be ambulatory and independent when they first decide to seek palliative
treatment. Over time, a slow progression of pain or excessive weakness
begins to set in and appetite will decrease. This usually signals the
next stage of care: where the patient is unable to get around as easily
as before. This typically indicates that a home-rest-bed scenario is imminent.
From this point on, patients can experience issues and symptoms that result
from immobility such as skin breakdown, muscle atrophy and increased weakness.
They usually "nest" in bed and become more comfortable with
their environment. This is the stage where, hopefully, the family is talking
with their loved one and emotionally connecting with them. It's a
time for comfort and visitors so that everyone can reflect upon their
lives together.
The Discussion
The sooner a family can talk about the palliative situation, the better.
Avoidance can lead to undue stress, resentment and even unbearable guilt
over not having cleared the air. Professionals should encourage family
members to communicate with the patient and with each other. Families
also need to know that there are times when they'll need to take a
step back from the situation. As a registered nurse, I usually begin dialogue
with the patient long before any of the family does. Patients feel a sense
of comfort when opening up a conversation about their emotional state,
and together we strategize how and when they want to bring up the topic
with family. I believe my patient tends to confide in me because I stay
objective and am not in denial about their condition. Family members appreciate
and understand the uniqueness of this relationship that develops, and
over time they too realize the value of this support for their own thoughts,
fears and grief.
Palliative Care at Home
The benefits of home Caring for a loved one at home provides many advantages
to the patient: frequent contact with loved ones, continuity of care,
and the comfort of being in their own environment. I care for the majority
of my palliative clients in their homes. While this scenario is often
soothing for the patient, it is an adjustment for family members. Families
in a home palliative situation may fear that their loved one may be better
off by being hospitalized. They feel the hospital may be a safer, more
supportive place; however, this usually isn't the case. For the most
part, palliative patients receive more consistent care at home and are
more easily supported by their relatives and friends in a comfortable setting.
A Range of Emotions
Professionals should expect a full range of emotions to emerge from the
family members of a dying loved one. Families should react to a palliative
situation as they need to; they have the right to be sad, angry and feel
afraid. They should ask all the questions they want, and try to get as
much support from a professional as possible. It's never easy to lose
a loved one, and the lives of others are impacted in many ways. It is
essential for them to heal after their loss. I keep in touch with families
after the patient has passed on to make sure they are managing as well
as can be expected. Families are often shaken by being involved in caring
for a dying loved one, and the experience opens up the door to facing
one's own mortality. I encourage family members to seek the help they
need, whether supportive therapy, a well-deserved weekend away, a nurturing
massage, or any other measure that can help them cope and heal. For family
members, moving on does not mean forgetting the dearly departed, it means
taking care of themselves. Health care professionals can provide the best
palliative care by understanding the emotional experiences of family members
and offering the most support possible.