Most people do not want to go to the hospital. There is a lot of stopping and going in the emergency room, where you might have to wait hours in an uncomfortable bed shivering in the cold unable to access snacks or your favorite Netflix shows interspersed with brief periods of activity, often involving needles. People working in the hospital often seem to be in a rush without much time to explain exactly what is going on or to hold your hand, so to speak, during times of uncertainty. The hospital bed is not nearly as comfortable as your own at home, and the food is not cooked or seasoned exactly the way you would at home. You spend hours constrained to your room, sometimes even to your bed, and taking a shower can become an ordeal. Spending time in the emergency room or hospital is overall not a comfortable experience.
So we have to be feeling pretty scared about what we are experiencing if we feel that we (or a family member) need to go to the hospital to get help, whether it be for relief of a symptom such as severe pain or vomiting or to make better a loved one who is no longer responding and talking to you like they normally do. Often it seems that all the processes in the hospital are set up to constantly move forward, the end goal being to discharge you (or your loved one) from the hospital, hopefully in a much improved state than when you entered the hospital.
Sometimes, though, things do not move smoothly forward in the hospital. Sometimes a patient in the hospital may feel like they need more support to share the burden of big news (read Post 17: How to Discuss Serious, Difficult, Hard to Hear, Bad News in Six Steps), to discuss major unexpected changes, to discuss difficult options, or perhaps to feel less lost or alone as they are being bombarded with information. During these times, consider holding a family meeting to discuss, for example,
· a major new diagnosis
· a major change in the direction of your medical treatments
· when multiple specialists are providing lots of new information
· an upcoming big procedure or surgery
· doctors' worries about how you are doing
· a somber prognosis.
If you are the family member of a loved one in the hospital, you may consider holding a family meeting for any of the above reasons in addition to for example, if
· your loved one becomes very confused and unable to make decisions
· your loved one is transferred to the stepdown unit or intensive care unit
· your loved one has more than one hospitalization for the same reason within months
· different family members have different opinions about treatment paths
· doctors talk about being worried about your loved one's "grave," "guarded," or "poor" prognosis (read Post 38: Choosing Where, When, and How a Loved One Dies Takes Knowledge, Action, and Courage).
Remember that each of us bring our own histories and perceptions to a meeting, and we may each have a different agenda. Perhaps a patient's priority is making sure that his adult children meet in one room and then separate on good terms. One family member may be focused on how the patient's kidneys are functioning day to day, while another family member repeatedly shares how difficult it was for her husband's siblings to handle their parent connected to the ventilator and that she does not want her own siblings and her own parent to go through the same experience.
The following are suggested steps to take to increase the chances of completing an effective and meaningful family meeting, even if it is to be the first of many. The steps are directed towards the family member who is organizing the meeting, specifically for a loved one who is a patient in the hospital and who has the mental and physical ability to be included in the family meeting.
1. Gather all relevant medical information.
This may require some persistence on your part, especially if multiple specialists are involved. You may need to ask to speak with each specialist for ten minutes, whether it be as soon as they step into your loved one's hospital room or asking the nurse or primary medical team to help arrange for a time to speak. Examples of questions to ask specialists and the primary medical team include
- My dad was able to walk around on his own and drive. Do you think realistically he is going to be able to get back to living on his own at this point? If not, is there anything we can do to realistically get him back to that point?
- What is the most realistic best case scenario, and what is the most realistic worst case scenario?
- Big picture-wise, what are you, the doctors, most worried about right now? If you were talking to another doctor right now, what would you be saying to them about your concerns?
- My dad has blockages in the main artery to his heart and in other arteries too. We were offered option #1, which is to try to place stents in his heart. However in his case, he would be at high risk for complications. He would also likely have to start dialysis afterwards since his kidney function is already bad. Option #2 that was mentioned - but not really pushed because it is also high risk - is open heart surgery. Option #3 is not doing any procedure and putting him on the best heart medications possible and hoping for the best that he doesn't have a massive heart attack. What would you recommend for your own family member? If being able to move around on his own is important for my dad, which do you think would be the best option?
If part of the family meeting would be to decide which treatment path to take - and remember, monitoring how a loved one does instead of actively pursuing a procedure, or focusing on comfort without doing invasive tests or procedures may also be potential treatment paths - gathering pertinent information may include asking
- What is my dad's overall prognosis (life expectancy) as of now?
- Do you think this treatment will change his current prognosis?
- Would you be surprised if my dad had to return to the hospital again and again for this medical issue?
- Do you think this treatment would keep him from having to return to the hospital?
- What are the most realistic risks of my dad undergoing this treatment? What are the most realistic long term burdens?
- Would you put your parent through this procedure?
- If I were to say that some members of my family wanted to focus on comfort and potentially meeting with a hospice agency, would that sound reasonable to you?
2. Decide who will be part of the family meeting.
Anyone who has a deeply personal interest in your loved one's well being, offered trusted input, or provided major support in any way (physical, financial, emotional, social, or spiritual) should be invited to the big family meeting, especially when major concerns need to be discussed or important decisions need to be made. Sometimes this means including people with whom you may not agree with, but who still play a significant part in your loved one's life.
If you think you might need help to manage potential outbursts among family members who do not get along, consider asking for a third party to mediate, such as the hospital chaplain, your own spiritual adviser, hospital social worker, hospital ethics team, or hospital palliative care team. If the hospital palliative care team or ethics team were involved, they would likely help you gather information from specialists, contact family and close friends, and make arrangements for the family meeting.
If the hospital palliative care or ethics team were involved, they may also invite the primary medical team and other specialists to join for part or all of the family meeting. If neither service were available in your hospital, you could ask your loved one's primary medical team or key specialists if there were a good time that they could join for at least a part of your family meeting to explain your loved one's medical situation and answer questions.
3. Decide on the most optimal time for everyone to meet.
Everyone should have the time and space to sit through the meeting without interruptions and without intending to interrupt. This is not a conversation to squeeze in between running to the grocery store to grab a few items for dinner and hustling to pick up the kids at the end of school. Unfortunately, trying to coordinate multiple family members' work schedules (and the availability of healthcare providers if they plan to join) may be difficult, and some may have to join by speaker phone.
On a side note, having a box of tissues in the room and enough chairs for everyone to comfortably sit are often overlooked but very important. Family meetings can become emotional, and they can last from half an hour to a couple hours.
4. Decide who will moderate the family meeting.
The person organizing the family meeting may end up being the person moderating the meeting, but the moderator could be any person that the family agrees upon. If a third party such as the hospital palliative care team or social worker were joining, it would likely be this third party who moderates. The two main purposes of the moderator are
· to redirect discussions back towards the loved one's wishes and the loved one's medical situation any time the conversation veered off track
· to remind even the most vocal family members that everyone who wanted to talk will have a chance to speak, even if this meant going around the room and naming each person to ask them if there were anything they wanted to say.
To maximize the effectiveness of the family meeting, consider having family members bring lists of questions and main concerns that they want addressed during the course of the meeting. This minimizes significant concerns voiced toward the end of a family meeting, when people may feel emotionally or mentally tired and therefore be less deliberate with their thinking and their words. Also, this may help the moderator realize if the family meeting may have to spend some time on particular concerns.
5. Let your loved one define what is important to them.
You and your family should hear from your loved one what quality of life means to them at this time. They may talk about goals or major events or holidays they hope to reach. They may talk about what is most important to them at this stage in their life (read Post 7: I Want the Best Care Possible for ME - Part 1 of 2). They may talk about at what point they would consider focusing on comfort. "I just want to be able to move on my own. I don't want to be paralyzed. I don't want to be bedbound and dependent on others. If I get thirsty, I want to be able to get up and grab my own glass of water. If I couldn't do that, well, I'd say, 'It's time for me to go.'"
This is a reminder to everyone that your loved one is not just a patient in a hospital bed, laden with a medical diagnosis and for whom you may feel a need to protect. Your loved one is a person with a rich history with personal hopes and worries and their own ideas about what they think is happening to their body.
Sometimes in the hospital, people get swept into the forward movement of moving on to the next procedure, attempting the next medication, awaiting the next lab number. It is easy to forget to take the time to pause and say, "What does this one lab number mean for Dad's quality of life, both with regards to how he is doing now and later when he leaves the hospital? Why are we focusing on this detail? What's the big picture? How is life going to be different when he returns home?"
6. Share what the healthcare teams are saying.
Presumably, if your loved one has the mental capacity to understand what is going on and be part of the family meeting, then they already know what the doctors are saying. Certain family members who have not been able to visit the hospital may not be aware of exactly what is going on. Sometimes, so many family members visit the hospital that the primary medical team and all the specialists have each shared information to different family members, and these family members may not have the whole picture.
One family member may have heard from the intensive care unit doctor, "We are worried about how your father is doing. He is on two life support IV medications to keep blood flowing to his organs and to keep them from failing completely." Another family member may have heard on that same day from the nephrologist (kidney specialist), "His kidney function is stable. His labs are okay. His breathing is stable. We do not need to start dialysis today." Both sets of statements may be accurate and yet paint completely different pictures of how a loved one is doing in the hospital.
Since you had already completed the first step in speaking with your loved one's specialists and medical teams about their honest thoughts about the big picture, this is the information to be sharing with your family members. Or if your loved one has the energy, they may be the one to relay information they have obtained from the healthcare teams.
Though you do not want family members to get distracted by details, sometimes discussing the big picture includes sharing certain details that reinforce the big picture. "I know Dad has had heart stents placed before, and he did fine. However, this time the blockages are located in places where the cardiologist would have a tough time placing stents. The risk of Dad having a complication like a big heart attack, heart failure, or stroke is apparently very high, and any of those complications could result in Dad not being able to move around on his own. And that's the long term goal, that's what's most important to Dad. He wants to be able to move around on his own for as long as possible."
Sometimes sharing big picture information includes relaying what specialists have to say about your loved one's likely prognosis. If a loved one's prognosis were months, your loved one or your family may think that undergoing a certain procedure would not be worth the potential complications. If a loved one's prognosis were years, the potential long term benefit of a particular medication may be worth attempting that medication.
If family members question the information you are sharing, make sure they are given a chance to paraphrase what they believe is going on. Many times people are not on the same page because they were given different data or a different perspective by different healthcare providers (ex. someone is "stable" on the ventilator versus someone's lungs are "dependent" on life support). If healthcare providers, such as the hospital palliative care team, were part of this family meeting, they could be helpful in clarifying misconceptions.
If discussing potential treatment paths, share what the various specialists and primary medical team may have said about potential realistic benefits and potential realistic burdens. Patients usually learn what the purpose of a proposed treatment or procedure may be, but burdens that could have big impact on quality of life are often not discussed. Potential realistic burdens may include, for example,
· financial costs (of long term medications, equipment, copays, transportation, etc) related to the treatment path
· physical recovery time (such as extended rehab or multiple follow ups to clinic after hospital discharge)
· side effect symptoms (including symptoms that may either be difficult to control or long term even after a treatment is stopped)
· transportation coordination (such as to three times weekly dialysis or to daily radiation)
· long term need for personal equipment (such as an oxygen tank or hospital bed)
· impact on appetite and eating (which, if severe, can result in prolonged hospitalization or even recurrent hospitalization for dehydration and weakness)
· impact on bowel movements (which, if severe, can also result in prolonged hospitalization or a return to the hospital after discharge home)
· impact on social activities (such as hanging out with friends, dating, or maintaining sexual intimacy)
· impact on energy level that may negatively affect the ability to independently care for self on a daily basis.
Discuss which treatment path - including the path to not proceed with a new medication or procedure and to monitor instead - may result in the highest chances that your loved one will get the quality of life closest to what they want for as long as possible.
7. Allow your loved one to declare what they think would help them most.
After ensuring everyone is on the same page with regards to understanding the realities of your loved one's medical situation, the next step is again allowing your loved one to lead the discussion as much as they want to lead. Sometimes patients in the hospital want to assert that they are still in control of their life, their body, and their choices. Other times patients in the hospital need a break from decision making and they would rather see what their family members have to say before agreeing or disagreeing.
Questions you might ask your loved one to answer are
- Which treatment path do you think will most likely allow you to keep the quality of life/ independence/ mobility/strength that you want?
- Which treatment path has the greatest likelihood of complications, side effects, or burdens that would really worsen your quality of life?
- Six months from now, good outcomes or bad (since no one can predict the future and know exactly what will happen), which path would you regret the least?
If other family members are providing input and are stuck on a particular agenda, the moderator may need to remind them of the purpose of the family meeting. "Hey, we're all here to talk about Dad. Let's set that aside and focus on what's going on with Dad, what he wants, what decisions we're going to make, and how we can support him as a family."
This may also be the time when the moderator may consider going around the room and asking each family member for final input, especially if the conversation is being dominated by a vocal few.
Ideally, everyone agrees on the healthcare decisions, and all agree on the treatment path to take, even if only for a time limited trial (read Post 69: 6 Reasons to Trial the "Time Limited Trial"). However, sometimes the best a family may get to is agreeing to disagree. Sometimes the best certain family members may be able to do is express love and support for their loved no matter what happens, acknowledging that their loved one has the right to make decisions that affect their body even if you were to personally disagree with those decisions. One of the hardest things a family member may need to do in a family meeting is set aside their pride and ego instead of pushing their own opinions and agenda, all in the name of supporting their loved one. "I still think we should push to get the stents done, at least in the main artery to your heart! But if the possibility of experiencing a stroke during the procedure is the worst thing you can imaging happening - even worse than a big heart attack - then I can see why you would want to try to treat the blockages with medications."
8. Summarize, record, and communicate thoughts and decisions from the family meeting.
Bring the conversation back to what is most important for your loved one, and remind everyone your loved one's goals of care and what they consider essential for quality of life. Summarize what was discussed and list next steps, which may include any or all of the following:
· the person who will communicate the results of the family meeting to your loved one's primary medical team [usually this is the medical power of attorney; read Post 4: Eleven Common Myths about the Medical Power of Attorney (MPOA)]
· to which medical teams the designated person will communicate decisions from the family meeting
· exactly what decisions will be relayed to your loved one's primary medical team and specialists
· how the designated person will communicate to the rest of the family the responses of your loved one's medical teams, the medical path that is actually taken, and any potential changes in how your loved one is doing (via email? via group text? via Facebook? via a personal health journal website?)
· the next time the family will meet if certain topics still need to be discussed or if necessary decisions were unable to be made during this family meeting. If the family meeting was difficult to navigate on your own, you could potentially ask for the hospital palliative care team, ethics team, social worker, or chaplain to moderate the next family meeting.
Note, certain topics may need to covered over several conversations, especially if some family members need time to process information. Other times, families may need to meet multiple times as a loved one's medical condition changes during the course of a hospitalization.
9. Follow through on the next steps.
Maintain trust among family members that they will be kept updated and not kept in the dark, that they will have opportunities to give input or express support as needed. This goodwill may especially be necessary if there ever came a time when another family meeting would be needed.
Often family meetings in the hospital may occur in which a loved one has neither the physical nor mental ability to be a part of the meeting. Sometimes family meetings may involve family members with strained or tense relationships. For these scenarios, I will offer additional suggestions in a future post (read Post 55: Family Meetings Can Go Sideways Fast: 3 Tips to Getting Back on Track).
Note, sometimes serious changes in a person's medical condition or major healthcare decisions have to be discussed even if one is not hospitalized; the above steps could certainly be modified for the family meeting at home. Whether at home or in the hospital, for those who find themselves wondering how to proceed when they or their loved one is feeling "stuck," "trapped," "overwhelmed," "lost," or "uncertain" due to big changes in their health or medical condition, I hope this post serves as a helpful guide on how they could move forward via an effective family meeting.