Managing chronic and serious illness: Teams and Teamwork

More specifically, it is a cooperative effort between two teams Ė the medical team and the family team. Usually, both teams are working very hard. However, problems may arise because of poor communication between these teams. From your side, you may find it very confusing as to who is on the medical team and what they are doing. Similarly, on the medical side, the clinicians may be confused as to who you are Ė what role you have in the family, who other important family members are, what the circumstances of your family are, and how your family usually deals with illness. Sometimes, there is confusion even in the family as to who will do what.

What you can do

  1. Make a list of important clinicians on the medical team, their roles, and how best to contact them.
    • Nurses are at the heart of the care given in any health institution. Please talk with the nurses and find out which nurse is assigned to your loved one. The nurse will be a treasure trove of information and will be an ideal person to support you during this time of stress.
  2. Clarify, if necessary, the roles of family members (and friends) in your family network. You may be surprised about how much or how little some of your family members may know about the situation and how they want to stay involved in the process.
  3. It is important to identify the person(s) playing the following key roles:
    • Principle spokesperson: Especially in a large family, it may help to decide on a principle spokesperson for the family. This person will serve as the primary liaison between the medical team and the family i.e. this person will communicate both with the medical team to ask questions and elicit information and then inform the other family members about what is happening with the care and care plan of the patient.
    • Key decision maker: Figure out who is the key decision maker in the family. (See below for more on this.) If the patient (your loved-one) is an adult who has not lost decision making capacity due to illness and is able to think clearly, then usually he or she is the key decision maker. In this case, you role may be as an advisor. However, if your loved-one is not able to make decisions or wishes that a family member do so instead, s/he will need to identify a person who will serve as the surrogate decision maker.
      Commonly, people designate a spouse or significant other as their primary decision maker. Adult children, siblings or close friends can also serve as surrogate decision maker. This role may have been already established, if the patient has left written instructions in a document like a Durable Power of Attorney for Health Care. If not, then often clinicians will turn to the nearest next-of-kin such as the husband or wife of the patient. However, in some families, someone else may traditionally take the lead, such as an adult child of the patient. Whoever it is, it will help if there is a clear understanding within your family and with your loved-oneís medical team as to who the key decision maker is. Other family members may still have input into medical decisions, but it really helps to have one person taking the lead.
    • Surrogate decision maker and order of surrogacy: In event that no surrogate decision maker has been identified and the patient has lost decisional capacity, the state law governs who the legal decision maker should be. In Florida, the spouse is the default legal decision maker in situations when the patient is not decisional and has not identified a designated decision maker. In California this is not the case. Check your individual state laws to identify who the legal decision maker would be.
  4. Make sure key clinicians (your primary physician, nurses, and social workers) know who to contact your family and how. Consider writing out contact information and asking that they put this in your loved-oneís chart. This is particularly important for the key decision maker in the family, if this is not the patient.

Durable Power of Health Attorney for Health:

Appointing a durable power of attorney for health care is a procedure by which the patient identifies a person and authorizes them to be her/his agent to make all decisions for regarding health care. This includes the power to withdraw any type of health care, treatment or procedure, even if the patient may die in the process. The durable power of attorney for health (DPOA) is the patientís agent only for health care decisions (not fiscal or estate related issues) and is expected to follow the patientís health care choices directive.

The DPOA for health care has the power to:

  • Make all necessary arrangements for health care on behalf of the patient. This includes admitting the patient to any hospital, psychiatric treatment facility, hospice, nursing home or other health care facility.
  • Request, receive and review the patientís medical and hospital records.
  • Take legal action if necessary to do what the patient may have directed.
  • Carry out the patientís wishes regarding autopsy and organ donation, and decide what should be done with the patientís body.
  • The agent also should not be compensated for services performed in her/his role as a DPOA.
  • The DPOA may be reimbursed by the patientís estate for reasonable expenses that are part of the patientís care.

The DPOA has the responsibility to:

  • Advocate for the patient.
  • Safeguard the rights of the patient.
  • Make health care decisions on behalf of the patient based on patientís past stated wishes. If you are the designated DPOA for someone, you should have several discussions with them about potential future scenarios and gain a better understanding of their thinking about health and illness.


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