Plan of Care

Trying to communicate a Plan of Care is often misunderstood or regarded as a waste of unnecessary effort and time. The timing of a Trisomy 13 or 18 child reaching end of life issues so quickly after birth is stressful in and of itself. But without delineating a Plan of Care, important issues are likely to be neglected or worse, regretted.

A Plan of Care is typically created by a physician and the staff but it typically also involves many members of an interdisciplinary team. To be effective and comprehensive, the process must involve all disciplines that are involved in the care of this patient, especially you, the parents of your minor child! Preparing for a Plan of Care conference can help you, the parent, outline your "road map", to guide all who are involved with a patients care to understand your background, beliefs and intentions.

If you have a prenatal diagnosis, you may want to gather your child’s physicians together before the delivery (about 6-9 weeks before delivery) to discuss these topics. Physicians may balk (especially if they feel you will not come to term) but you must do everything possible to prepare for this child, and they need to know how serious you are. Preparing a plan prenatal is typically called a Birth Plan and offers details to the delivery staff on your desires and expectations for the medical treatment of your Trisomy 13 child. But having a birth plan will help all the staff to know how to better help you and relieve you from having to tell the story over and over again and again (but in some cases this cannot be avoided). However, if you learn of your child’s diagnosis after delivery, allow the Plan of Care outline to help you stay focused on your child's medical care amongst your many emotions.

The first step in care planning is accurate and comprehensive assessment. Your physicians will have to have given you their professional opinions and advice prior to this meeting. You have the right to ask for time to think about what you have heard. But that can be complicated with the following situations that may arise due to ineffective communication. The following is outlined NOT AS A GUIDE, but as a resource to help you stay focused on keeping your communication skills honed during a particularly stressful time in your child’s Trisomy condition.

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 considered extra-ordinary.

Unfortunately, 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 urgency.

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 children.

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.

B. More frequently Parents look to Physicians for education and treatment plans

o Physicians have come to accept this as the first phase – and don’t expect parents to be overly involved in the physicians’ role as they are typically considered the person providing the medical advice and are not typically challenged on standard procedures for standard diagnoses.

o But in the information era, lay persons have been better able to assimilate various fact finding techniques and pull together medical opinions from other cases to bring to discussion for the patients plan of care. With a more informed parent, the doctor-parent roles in plan of care have had to adapt allowing parents to ask “what if” scenarios, allowing parents to present their thoughts and DISCUSS together how to make the best informed decisions based on all their knowledge or accumulated facts for their particular circumstance.

o Parents frequently ask their children’s doctors for professional opinions

i. Some families accept their doctors OPINIONS as facts.

ii. Parents need to train their ear to differentiate between a speculation, a hypothesis, a treatment plan of action, a diagnosis, or a fact.

o Parents sometimes ask doctors to educate them on all the aspects of this situation

i. Explain the symptom, disease, syndrome, or circumstance

ii. What is the impact to your child (short term, long term, to each body function if applicable)

iii. How has it been managed with other children

iv. Statistical outcomes

v. What is the physicians’ treatment philosophy?

o Only some parents actively look for those who can provide resources for family support and support for their child’s specific medical condition(s). You have the right to ask hospital staff for help in finding resources. Most hospitals have a research library for parents and Google is great tool for fishing for information.

o Even fewer parents question how their child is being treated medically in relation to other children with similar symptoms.

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 (occurrences more typical in medically fragile children and terminal situations especially when the patient is a survivor of any length of time)

o This phase typically comes after the family has managed to grasp the emotional aspect of the diagnosis and after getting adequate medical advice.

o These Parents have been strained to communicate on several occasions that some of these children (specifically Trisomy 13 and not just their child) can live beyond the statistics.

o Sadly, Recognizing that these kids can live, doesn't mean the medical community will automatically do everything possible for them, parents still have to demonstrate:

i. - not in denial,

ii. - the gravity of the situation is understood

iii. - And let physicians know that as a parent you have to prepare for a full spectrum of possibilities (from death as well as, a full life and everything in between). If your child's physicians do not accept the chance of any hope, you have to decide if it is based on the physicians’ inner belief, on the determination of medical literature or if the data regarding your son is truly dire.

iv. – REGARDLESS, the next step is to ask them to support you in your efforts to give your child a life that is 'as close to normal' given these special circumstances

v. – in some cases,

o you may need to do more …

o you may need to find another physician

o you may need to find help coping wth these circumstances

o As our Trisomy 13 children get older, parents typically become the most informed advocate for their child and typically know what to do when certain situations arise. We come to learn a "new normal" as it has been phrased. It is the responsibility of the parents to keep the physicians informed as to their requested Plan of Care for their child should the child need medical intervention. And physicians should be led to understand that your request for your child’s Plan of Care is not a denial of the underlying diagnosis but is a Plan of Care you feel the doctors can support, based on your beliefs and gives the best treatment and care for your loved one.

All children should be treated with dignity and respect for human life (physicians Hippocratic Oath that they cannot deny). Further, the Plan of Care will lay out how far interventions will go to treat the underlying diagnosis. Therefore, the communication between you and your physicians is crucial. Let the physicians know that your views on your child’s Plan of Care will need periodic updates as things change and you reserve the right to change your minds on any of these determinations. Outlining your child’s Plan of Care for conferences with the physicians is a TOOL to aid in communication and is open for discussion as EACH situation arises (each snapshot is a time for a Plan of Care review).

The reality will always circle back around to this ... no matter all the surgeries and interventions and best of intentions, THERE IS NO CURE for Trisomy 13. But not single out the sick, handicapped or terminally ill, the reality also is that death will come to all of us - and to some it may come sooner rather than later. All we can do is try as much as humanly possible to aid our children through their health issues and life's journey. Blaming the physicians or yourself should not be the outcome - We mourn with you for the loss of your hope, expectations and dreams due to these health issues. We remain with you in your struggle and we sit by you in your moments when you just want to be alone, talk or listened to.