Wouldn’t you assume that your next of kin—your spouse, your adult children or your closest relative—could make health care decisions for you in the event you could no longer make your own? Most of the time, you would be right. But in my experience as a hospice physician, decision-making at the end of life is not as straightforward as you might imagine. Unless you have legally designated a health care decision maker, there is no guarantee that your wishes will be carried out. Here is what you should know about end-of-life health care decision-making.
What is the Difference Between a Surrogate and a Health Care Agent?
A family member who is not a health care agent is called a surrogate. The State of Maryland, under the Health Care Decision Act, places limits on decisions that can be made by surrogates. In terms of the law, surrogate means someone who has decision-making power based on a relationship to the patient: first, a spouse (if there is one); next, a parent of an adult or the adult children of an adult; then siblings. In cases where none of these categories apply, another person who has been close to the patient can complete an affidavit describing that relationship, which must be witnessed. That person then becomes the surrogate.
A health care agent is a person who is specified in a health care power of attorney. Powers of attorney are commonly completed along with an advance directive, such as a living will, or “Five Wishes” document. A health care agent can be anyone you wish to speak for you. If you do not feel that your spouse or children would be able to represent your wishes for whatever reason, you can name a close friend or another relative. By appointing a health care agent, you can be sure that the person making decisions is the one you want and that they understand your wishes for care at the end of life.
A health care agent has greater powers than a surrogate. The most important of these is the ability to change the person’s “Code Status”—which means whether the person should have CPR—on the MOLST form (Maryland Orders for Life-Sustaining Treatment). A completed MOLST form is required for Maryland residents who are transferred from one facility to another (for example, from a hospital to a nursing home). It is also a good idea to have a MOLST form if for any reason you do not want CPR, or you want only mechanical ventilation or non-invasive ventilation (CPAP or BPAP mask) but no CPR. Without this document, facilities must perform CPR, and the EMS (Emergency Medical Services) must also perform CPR.
Risks of Not Naming a Health Care Agent
Here are two examples of what can go wrong when a person does not have a health care agent. To preserve confidentiality, these cases are not describing actual patients, but they are quite realistic in depicting problems that arise every day in medical decision making.
Example 1: Limits to Surrogate Decision-Making
Mrs. Walker was a 68-year-old woman with diabetes and hypertension. Unfortunately, she suffered many complications of diabetes, including eye, nerve and kidney damage. She also had peripheral vascular disease and diabetic foot ulcers, ultimately leading to an amputation of one leg. After the surgery, she developed kidney failure and started dialysis. She was transferred from the hospital to a skilled nursing facility, which provided dialysis. Sadly, she did not do well. Her appetite was very poor, and she ate little, despite appetite stimulants and antidepressants. She had a wound on the left leg, and doctors thought that she would ultimately need amputation of that leg as well. She was not able to participate in physical therapy and became very weak. She had recurrent bouts of infection from the wound and the dialysis catheter, which had to be changed several times. She became withdrawn and delirious, and despite intervention by psychiatry and neurology, she was no longer able to communicate her health care wishes.
During her final hospital stay, her son and daughter, who were her surrogates, agreed that their mother would not want to continue with the dialysis, and they elected hospice care. A new MOLST was prepared by the hospital physician and the patient was transferred to a hospice. The hospice social worker noted that the children were surrogates and not the patient’s health care agents. In Maryland, only a health care agent, or a guardian with the approval of a judge, can agree to a “Do Not Resuscitate Order.” For a surrogate to do so, two physicians must certify that CPR would be futile for the patient, and this must be documented in the medical record.
Upon discovering that the children were surrogates and not health care agents, the social worker notified the hospice physician, who had no choice but to send the patient back to the emergency room. The family then had to wait for two physicians who had cared for their mother during her hospital stay to document the futility of CPR in the medical record. She was finally able to receive hospice care, but only after a transfer to the emergency room that was traumatic for the patient and the family.
Example 2: When Family Members Don’t Agree
Mr. DiMaggio was a 77-year-old man with dementia who came to the hospital because of a change in mental status and cessation of eating and drinking. He was evaluated in the emergency room, where he was found to be dehydrated with a urinary tract infection. He also had a low sodium level. Doctors replaced his fluids and electrolytes, and treated the urinary tract infection with antibiotics. His lab values returned to normal, but he still was not awake enough to eat. He was not cleared for oral intake by the speech therapist.
The palliative care team met with his four children to discuss his care going forward. The patient did not have a MOLST form, had never made an advance directive, and had not talked to the children about his wishes. Two of the children wanted aggressive care including a feeding tube, CPR and mechanical ventilation; the other two children wanted him to receive hospice care. One of the children who wanted hospice care was the primary caregiver for the patient. She believed that her father would want comfort care, if he were able to decide.
After several more discussions, the case was referred to the hospital Ethics Committee (also known as the Patient Advisory Committee), which every hospital in the state is required to have. The Ethics Committee concurred that based on his age and advanced dementia, CPR would be futile. A geriatric consultant discussed the lack of benefit of feeding tubes in patients with advanced dementia. In Maryland, where parties of equal standing disagree, the Ethics or Patient Advisory Committee may cast the deciding vote. The patient’s code status was changed, and his MOLST form reflected a more palliative approach with a “Do Not Resuscitate Order,” as well as the order to not hospitalize and to provide comfort care only. The patient went home with his daughter for home hospice. The two children who disagreed remained bitter about being left out of the decision-making process for the remaining days of the patient’s life, and refused to attend the funeral.
Other Factors to Consider
There are other reasons for completing a health care power of attorney and living will, besides ensuring that you do not receive CPR if two physicians think it would be futile. Futility is, to some extent, subjective. Instead of having futility be the deciding factor, you can outline the specific conditions under which you would not want to be resuscitated.
When you prepare the documents, it’s essential that the decision makers you have chosen are aware of and accept this responsibility. It’s an occasion to think about and discuss your wishes. Family members who know they are acting in accordance with a directive are more at peace and more confident in making decisions on your behalf. It’s your final gift to the ones you care about and may spare them from much anxiety and grief at a time that is bound to be difficult enough. If you’re ready to take care of this, do it now!
Here’s some guidance:
- Study the materials (Maryland Attorney General website for MOLST and advance directive; some people prefer the “Five Wishes” form available from AgingwithDignity.org) and think about what you would want done as you near the end of your life, and who you would want to make decisions for you. Complete the Health Care Decision Maker, even if you are unsure about your wishes.
- Talk to the person you want to be your decision maker; make sure he or she understands and agrees to carry out your wishes.
- Talk to your doctor and make sure they have a record of your advance directive or power of attorney, and talk to your doctor about your goals (Medicare will pay for this visit).
You may also want to consult with an attorney (usually the same one who is helping to prepare your will). However, there is no requirement for a lawyer—or even a notary—to complete a health care power of attorney. You just need two witnesses. The witnesses cannot be the people you name as your agents, or anyone who may inherit or otherwise profit by your death (details are spelled out in the form).
marylandmolst.org (Maryland MOLST forms and directions)
Agingwithdignity.org (Five Wishes)