top of page
  • Jeanne Lee

Post 69: 6 Reasons to Trial the "Time Limited Trial"

Updated: Oct 11, 2022

Some health or medical issues can be managed with relatively straightforward treatment plans:

"I agree to surgery to fix this fractured ankle."

"I consent to the cardiac catheterization - and placement of any stents if necessary - to manage this big heart attack."

Sometimes, there is no obviously "right" treatment path for a difficult health or complex medical situation. This is when a "time limited trial" of a treatment path may be helpful. Everyone who has a say in one's medical care - usually patient, family members, and healthcare providers - agree to embark on a particular treatment path or attempt a particular level of medical care for an agreed upon limited time, such as two days, one week, or one month.

“We understand decreased alertness and eating are a normal part of the dying process. We would still like to try giving IV fluids to see if hydration will cause him to be more alert. Can we give IV fluids and reassess in two days if the IV fluid made any difference?”

All would agree upon endpoints to determine if the time limited trial worked or did not work. Conversations regarding how to medically proceed after the time limited trial would then largely hinge on how the patient’s body had responded to this time limited treatment.

Note, the time limited trial can be used in any setting - home, clinic, facility, hospital, or intensive care unit.

Home visit example

The palliative care team (read Post 1: What Exactly Does a Palliative Care Specialist Do?) was asked to see Mrs. P in her home after her son removed her from the hospital before recommended discharge – also known as “AMA” or “against medical advice.” I saw Mrs. P lying comfortably in a hospital bed placed in the middle of the living room. After greeting Mrs. P, who briefly opened her eyes and resumed sleeping, I sat with her adult son, Mateo, at his dining room table.

“Before we start, what do you want to make sure we cover today?” I asked Mateo.

Mateo jumped in, “This is not my mother! My mother is vibrant and active. She walked into the hospital – yes, she was short of breath and coughing, but she was alert! They treated her for pneumonia and urinary tract infection, but they wouldn’t let her eat or get out of bed! They said she could only swallow things like pudding. They didn’t give her REAL food, so she just got weaker and weaker by not eating. Of course, she couldn’t work with physical therapy; she was too weak! So she stayed in bed and her bedsore got bigger and bigger. The hospital was killing her! I had to get her out of there.”

“It must have been such a scary and frustrating time. You expected your mother to get better entering the hospital and you saw her getting worse instead.”

“Yes! It was scary. I feared for her life.”

“And now she’s been home for a little over a week. How have you and your mother been doing?”

“I have to admit it’s been tough. She sleeps almost all day and all night. I try to wake her up every two hours to take a few bites of fish or chicken, but sometimes she just holds them in her mouth. I’m afraid she’ll choke on them so now I’m back to pureed vegetables. She’s only taking a few bites four or five times a day. The physical therapist evaluated her yesterday, and she wouldn’t wake up for him. And her backside! It looks awful! I need help.”

I told Mateo that it would be helpful to step back a moment to discuss how his mom had been doing prior to this hospitalization and to ask what his and the family’s goals were for his mom.

“I can’t answer specific questions about last year because my sister was taking care of her,” Mateo replied, “I can call her now, if that’s okay?”

“Sure!” I replied, “That would be helpful. Thank you.”

Mateo’s sister, Ana, listened over speaker phone as I introduced myself. “We’re calling you to get a sense of how your mother was doing before this hospitalization. I know it was a long one, and Mateo was telling me how frustrated he felt by the decline he saw in your mother.”

“Yes,” Ana replied, “I visited her every day, and sometimes I honestly thought she was going to die there.”

“How was she doing for the months prior to going to the hospital?“ I asked Ana.

“Not good,” Ana answered, “She already had mild dementia, but she could still shower, dress herself, and even prepare simple meals. Then six months ago, she started needing more and more help. I ended up turning on the water for her because she’d get confused on how to turn the faucets. I dressed her because her balance was off, and she fell one time trying to put on pants. I couldn’t trust her anymore in the kitchen after she left the stove and faucets on. By the time she went to the hospital, she was hardly walking.”

“She was walking!” Mateo exclaimed.

“Yes, but only a few steps with us holding onto her and telling her when and where to step. She hasn’t walked on her own for months!”

I commented, “It sounds like before this hospitalization your mother’s dementia was already worsening.”

“Yes, that’s what I saw. I was having to stay with her more and more and even thinking of moving her in with me,” Ana confirmed.

“Knowing that your mother’s dementia was already notably worsening before this hospitalization - and likely the stress on the body and brain from her pneumonia, urinary tract infection, bedsore, and hospitalization have caused her overall health to worsen even moreso – what do you now want most for your mother?” I asked Mateo and Ana.

“No suffering,” Ana quickly replied, “I just want her to not have to suffer. Be comfortable. Feel safe and secure with family. Never go back to the hospital. I don’t want her to die alone in the hospital. I want her to die at home.”

“I don’t want her to suffer, either,” Mateo added, “However, I want her to be strong and active and alert again. I want her bedsore treated. I want to increase her nutrition, and I want her to work with physical therapy.”

“Honestly, I don’t think any of that will help now. I think rather than pushing her, we should focus on her comfort,“ Ana said.

At this point, I paused and thought, “This would be a good time to suggest a time limited trial. Any one of the following three reasons would be a good reason to attempt a time limited trial:

1. Family members disagree on the goals of care, priorities, and values for their loved one (read Post 7: I Want the Best Care Possible for ME – Part 1 of 2).

2. Family members disagree on whether a particular treatment path will make a difference for their loved one’s quality of life, strength, and function.

3. One or more family member needs more time to come to terms with the medical realities of the situation.”

We discussed a time limited trial of maximizing Mrs. P’s caloric intake with pureed and thickened liquids as recommended by the hospital speech therapist , as well as home health physical therapy and home health wound care nurse visits [read Post 40: Five Key Differences Between Home Health Care and Home (Provider/ Caregiver) Care]. I would ask the palliative care social worker to assist with setting up ambulance transport to a wound specialist physician.

Mateo and Ana also agreed to meet with a couple hospice agencies to learn how each of their hospice teams could help them keep their mother comfortable and safe at home (read Post 23: When to Consider Hospice Support – Example #1). I explained, “The hospice team are medical experts on managing symptoms at home. That’s why they become the new 911 when someone is enrolled in the hospice program. Your mother would not have to go to the hospital for symptom relief if or when you were to decide hospice were the right level of medical care for your mom.”

We agreed we would stay the course if Mrs. P were improving in alertness and strength by the end of one month and to have another goals of care discussion, including the real possibility of accepting hospice support at home, if she were to not improve by the end of the month.

Mateo and Ana gave it their best shot with this time limited trial. After almost two weeks, Mateo agreed with Ana that focusing on their mother’s comfort, ease, and safety at home would become their main goals. He called one of the hospice agencies he and Ana had had a “meet and greet” session with and enrolled their mother in their program.

ICU example

The palliative care team was asked by the Medical Intensive Care Unit (MICU) team to speak with the family of Mr. C. Mr. C was a 63-year-old gentleman whose closest family members included his wife and two daughters.

The MICU team was distressed, describing Mr. C’s multiple failing organs despite their best efforts to revive these organs with multiple life support medications and equipment. After they had just finished a conversation with his wife and children describing their worries about his prognosis, the nephrology team entered Mr. C's room and offered to the family a form of dialysis (continuous veno-venous hemofiltration, or CVVH) for Mr. C’s failed kidneys. This type of dialysis is given only in the intensive care unit to sick patients whose bodies cannot maintain a blood pressure on their own.

The nephrology team argued, "Let's buy his body some time with CVVH. Maybe we'll see improvement overall if we can support his kidneys."

The MICU team responded, "We can't see him ever leaving the MICU, and this will only prolong his dying."

As part of the palliative care team, I met with Mr. C's wife, Vicky, and daughters Victoria and Valerie. We learned that Mr. C worked as a mechanic and volunteered his weekends coaching a girls' softball team. Vicky was adamant that her husband would not want to live a "debilitated" life.

"What would 'debilitated' mean to your husband?” I asked, “Some people would say it's the inability to run or drive on their own. Other people would say it's not related to anything physical and that debility is the inability to recognize their family or think for themselves. What would be the minimally acceptable level of functioning for your husband to have quality of life?"

VIcky thought a moment and replied, "Debility would be his not being able to do what he loves most, which is coach softball. The girls are like family to him."

Victoria and Valerie nodded, and Victoria affirmed, “I agree. Dad is an athlete, and he needs to be independent and active to have good quality of life. Personally, that’s the only life I would want for him.”

“I agree, too,” Valerie added, “But Dad is so strong. I want us to give him a chance. If even one doctor thinks there is a real chance that he’ll walk out of here, I want to give Dad that chance.”

At this point, I paused and thought, “This would be a good time to suggest a time limited trial. Any one of the following three reasons would be a good reason to attempt a time limited trial:

1. The healthcare teams are having difficulty prognosticating and do not agree on the potential or likely trajectory of the patient (read Post 67: The Difference Between “Potential” and “Likely”).

2. The healthcare teams disagree on whether a particular treatment path will make a difference in how a patient will ultimately do.

3. One or more family member needs to pursue a particular treatment path to minimize potential second guessing and regrets in the future.”

After the palliative care team shared the expert opinions of the various specialist teams, Vicky, Victoria, and Valerie decided they wanted to give Mr. C every potential advantage that medical technology had to offer. If there were no improvement in the failing organs and his body still could not maintain its own blood pressure and circulation without life support medications within three days, they would discuss transitioning in another direction, toward letting things go and letting her husband/ their father be at peace.

"You know that quote that starts with 'God grant me serenity to accept the things I cannot change'? ” Vicky asked, “It's his favorite quote. I guess we'll have to live by it."

Mr. C did get started on CVVH/ dialysis, and the MICU team continued life support medications and interventions for the next several days. After three days, Mr. C’s family told the MICU team, “We want to free him from machines. He wouldn’t want to prolong this.” The following day, Mr. C underwent compassionate extubation, and he died within minutes surrounded by Vicky, Victoria, Valerie, and eleven other family members who were given the opportunity and time to drive or fly in to say their good-byes.

If you hear contrasting perspectives and recommendations from different healthcare providers and/or you and other family members have differing ideas on health priorities and the treatment path to take, consider arranging a family meeting to discuss a time limited trial of a particular treatment path (read Post 53: 9 Steps to Holding a Family Meeting When a Loved One is in the Hospital and Post 55: Family Meetings Can Go Sideways Fast – 3 Tips to Getting Back on Track).

The time limited trial may be especially helpful when there is much uncertainty and/or disagreement about future trajectories and prognosis. Perhaps the endpoints you and your family agree upon can then be used to determine whether to continue on a treatment path or to seriously discuss another path or even a change in goals (read Post 54: Why Should I Care about My “Goals of Care?”) .


Post: Blog2_Post
bottom of page