This outlines demonstrates three stereotyped categories occurring after the live birth of an “Incompatible
with Life” child
A. Denial or shock of the diagnosis
B. More frequently Parents look
to Physicians for education and treatment plans
C. Rarely, some parents fall into a role of knowing how they will communicate and how they want to manage end
of life issues when they arise.
A. Denial or shock of the diagnosis
o This is common in tragic situations and sometimes in a Trisomy diagnosis. Parental shock and avoidance of pain are serious emotional barriers
to overcome when the patient needs immediate decisions for treatment. In light
of the family’s social-emotional ability, the physicians have the right to make certain medical decisions.
o Parents may feel unable to make quick decisions when needed.
o Physicians do have the right to bypass the legal guardian in some cases.
o These can be perhaps the most arguable of decisions and family members often feel the least
in control and may even feel cheated when the realized outcome of decisions may lead to allowing outcomes they don’t
necessarily agree with.
i. Decisions to NOT USE extra-ordinary life saving measures may become
contentious to some families. This may include the decision to allow a natural
death and a DNR to ensure no additional invasive methods are used to prolong an unavoidable death.
ii. Alternatively, in some cases, the decisions DO LEAD to USE extra-ordinary
measures (Like ECMO or Ventilation) and some family members are faced then with making a decision to turn off a machine when
body systems fail versus allowing a natural death. This can also lead to contentiousness
in some families
iii. There is no right or wrong use of choosing to use or not to use extra-ordinary
means as the body reaches “End of Life” issues. However, when it
comes to the definition of Euthanasia, it is morally wrong to intentionally choose to end a life when the means are not
it can be ambiguous if you read closely the descriptions and definitions but do not understand the intentions of the heart. To avoid miscommunications from perspectives, it is advised to read the definitions
and moral law related to Euthanasia and/or to receive appropriate guidance. (Resourceful Links)
iv. Each child should be treated as an individual not as a syndrome or
a group and as such; these serious decisions involve weighing variables that differ with each situation. Each family will have to work through specific issues of the heart but resources are available on our links page to help you communicate your intentions more clearly regarding Patients Plan of Care.
o In other cases, some parents may think irrationally and ask for treatments that are unconventional
with no proven efficacy, while yet some other parents who are thinking rationally, want unconventional treatments as well. Both are forced to communicate the reasons why in a manner that will enable the medical
community to understand they are not endangering their child more nor in denial of proven medical techniques but rather looking
to provide an outcome based on their beliefs. (see the link at the bottom
of th page for links to the story of Abrahams Journey and song)
i. Dignity and Faith Beliefs sometimes can be hard to gain consensus
but requires CLEAR communication in a formal forum with witnesses and even a written plan with expected outcomes. This will avoid the medical community the opportunity to make decisions that will not impede on your rights
or beliefs and not to take over the medical direction all together.
ii. There are many different views on bio-ethics, becoming aware of your
rights will help you to better communicate your views in a manner that is intellectually respected by the medical community.
iii. When asking for treatments that are unconventional, it is vitally
important to keep a cool, clear head. Physicians
may evaluate your frustration in communicating as your personal emotional in-ability to cope and the physicians have the right
to make certain medical decisions if they can prove this. Or your denial of the nature of this illness may lead the
state to suspect medical neglect on the part of the parents.
o If rights to decision making on your child have been questioned, your uphill battle may involve
more than the hospital or physicians, it may also involve governmental agencies.
i. Communication is the only way to AVOID misunderstandings in relation to your social and emotional status.
ii. While shock cannot be avoided, avoidance of denying the diagnosis
(in the case again of Trisomy) is the best mitigation for this situation; however, thinking is very much impaired while in
shock so it is best to think ahead of all the necessary issues you may fall into and to make a plan ahead of time once you
learn of the diagnosis.
iii. In a hospital setting, a social worker will be assigned to you regardless
of your situation and they are there to help you cope as best a possible so you can get to where you need to be – which
is in the best interest of your family.
iv. Time will be given to allow yourself to gather thoughts together. If you feel pressed to make a quick decision, ask for more time. Only in few
situations is the situation truly dire in which case, you will get push back with an explaination of the
v. If you feel you need an advocate, call me ANYTIME.
o Blame and second guessing may follow caregivers who have not communicated a plan ahead of
time or have lost control of their child’s care.
i. Recognizing blame will help keep you stay on a productive tract.
ii. Journaling your feelings and experiences or simply writing down your thoughts will aid with second guessing.
Most hospitals will provide you
with a spiral notebook if you ask.
iii. Getting it out of your head will help to clearly organize the opinions
from the facts, the reality from the grief.
o Caregivers can work with support professionals and counselors to help parents come to term
with reality and better cope with loss (emotional, spiritual or physical losses - as much as can be expected at this
time – all things considered).
i. Some families have choosen to give up custody of their medically fragile
child after delivery as they are overcome with fears or the inability to manage their child’s on-going medical care. The Social Work office was responsible for finding a temporary foster parent for these
ii. Although no one wants to cope with any tragic situation if they had
a choice … all parents have the God-given ability to cope with tragic situations in their family if they can just allow
themselves to recognize that they are mourning the loss of something (either hopes, dreams, expectations or more) and
then gather their support resources and develop a Plan of Care to move forward.
iii. You will not be left to manage this alone. There are many here to help – and if you need help finding these resources – call me.