When we are faced with taking care of someone who has received a terminal diagnosis or the need to help an aging parent or family member who is having a slow mental and/or physical decline, we often do not know what to do first. It is often time (sometimes past time) that we begin to talk about the narrowing and shortening of their life span and the possibility that they may be reaching the end of it.
These conversations are not pleasant or comfortable, but to be the most compassionate caregivers we can be, we need to know what are the most important actions to take. Too often, the professional caregivers we rely on for our health at this time of of life do not have the training or desire to talk about what might happen if their treatments and interventions are not successful.
We, as caregivers, friends, lovers, spouses or family members cannot possibly do everything for our person. We cannot heal them or fix them or make them get better. We almost always have our own familial, professional and societal responsibilities that must also continue, even when our person needs more and more of our time, care and ability. Often, there is no way to make everyone happy or satisfied, but we can do our best to help meet our person’s most pressing needs and desires.
These questions can help everyone involved in the care and the person needing care, together, to create a Care and Action Plan. NOTE: THIS IS NOT JUST PHYSICAL NEEDS We are holistic beings. The thing our person may want to focus on or achieve can be emotional or spiritual. Just as there are medical and health practitioners that can help with comfort and medical needs, there are resources available for other needs and desires. At times like these, caring is a team effort. Find resources in your area to help you and your person. (Like your friendly neighborhood Departure Doula.)
- What do you understand your prognosis / your current health to be?
More than once, I have come to a family meeting when someone is convalescing at home under hospice care, and the family tells me not to tell the convalescing person that they are dying. I’ve had meetings with people who do not understand that their cancer has metastasized or is more severe and limiting than they have been lead to believe. If they are not capable of understanding, that’s fine. If they have clearly communicated that they do not want to know anything else about their illness or prognosis, they are completely within their rights. We cannot force anyone to do anything they do not want to do, including being more curious or informed. But, it is NOT acceptable to use euphemisms or avoid giving someone “bad” news because we do not trust them to make their own decisions or think that we or someone else knows better. It is dishonest, negligent and unethical.
2. What are your concerns about what lies ahead?
If/Once someone has stated they want to know their prognosis, best and worst case scenarios, and has had that discussion with their healthcare provider, it is time to let them address what they are most afraid of. Often it’s pain. Often it’s missing their family. It can be the feeling they will be a burden on their family. Sometimes, it is losing their autonomy and independence. Sometimes, they are afraid of dying and what will happen to their loved ones, jobs, home, etc. Sometimes, their fear of dying is about what happens to them or where they go after they die. Or it could be a combination of all of the above.
3. What kind of trade-offs are you willing to make?
Some people may want to accept the sickness, fatigue, and “bad” days of aggressive chemotherapy treatment if it will give them more days here with their important people. Some people would rather have days where they are comfortable and able to participate in activities and with family even if it means they forgo treatments or surgery. Some of our aging loved ones will agree to move to assisted living or retirement communities, but only if they can take their pet. This is a time when we should start prioritizing safety, autonomy, fear of pain, desire for comfort, quality of life versus quantity of days , and all the things they deem important and value. If we do not prioritize, no one will be able to make decisions without guilt, uncertainty, shame or panic. Prioritizing and deciding our most important values can help everyone make decisions to honor those values moving forward.
4. How do you want to spend your time if your health worsens?
Once our aging parents have had their first medical event or experienced their first accident or unsafe situation from mental decline, it is highly unlikely they will ever return to the “normal” that they were used to. No one wants to accept that our bodies and / or minds deteriorate and become more and more frail and sick as we age. But it’s going to happen, especially if we have already experienced a significant incident. We need to have these conversations with our person with dementia early. We cannot make decisions about how much intervention they might want (“force fed,” etc.) if we do not talk about it now.
The same applies when someone is facing a serious health threat — cancer, heart failure, serious infection. What if they do not get better? What would they rather be doing than lying in bed? Can we prioritize and make that happen now? If they really want to see their grandson graduate, can they have this procedure if it will “buy” enough time to be able to travel to it, even if having the procedure might be risky? Or can they be content having someone live stream the graduation while they rest at home?
5. Who do you want to make decision when you can’t?
This is the hill I will die on. I will be up there waving the flag of Advance Directives for as long as I can. PLEASE, if you are 18 or older, complete your Advance Directives. Each state has a free one through its Health and Human Services departments. There are different directives and specialized advance care plans that you may pay for, that emphasize your choices if your diagnosed with dementia or Alzheimer’s. There are programs that record your advance care wishes via video. You can write them longhand in a notebook. You can type them out on your phone or laptop. You can embroider them on a pillow if you want, but DO IT NOW. Then TELL SOMEONE WHAT YOU WANT AND WHERE THEY ARE. Yes, your Power of Attorney or Health Care Proxy can make decisions when you cannot, but it’s better if you make as many of those choices that you can now, and then THEY ONLY HAVE TO COMMUNICATE THEM FOR YOU!
States also have MOLST (POLST) forms available that are doctor’s orders that you fill out with your physician, you both sign, and it becomes part of your medical records. This step is not necessary if you are relatively young and healthy, but if you are at the stage where you are asking these questions and having these conversations, talk to the physician about having this form completed, and most definitely have a “point” person to help coordinate and keep track of appointments and notes and such, even if you are not incapacitated.
6. Are you safe (enough for what you desire your EOL experience to be)?
This seems straightforward. And as a paid caregiver, I must and will always ensure that someone in my care is safe from harm from falls, household accidents, or from wandering and getting lost, etc. But the fact is, as you get frailer and sicker, you require more care. Most of that care is basically about keeping you safe as you get better or die. Safety often requires the trade-off of some of your independence and freedom. The two are almost always diametrically opposed to one another.
It is important as caregivers and a society that we respect people and their autonomy and empower them to make their own choices, especially if they may already be nearing the end of their lifespan. Does your diabetic father in end-stage kidney failure love Rocky Road? Let him have it. Does your best friend want to stay home with her beloved dog and forgo that infusion or dialysis? It is their choice. We want to protect our people, but we must never infantilize them. We need them to make as many choices as they can as often as they can. (Even those with dementia and other medical deficiency, debilitation or illness.)
7. What are your immediate concerns (for comfort, holistic health, wellness)?
I visited a family where I was charged with helping the wife/mother who had progressive dementia with some activities of daily living. I arrived one day to find the husband/father had left a pan on the burner, and it was blackened and charred. Another time, a man’s dog had gotten out of the fence and was lost somewhere in the neighborhood. A woman for whom I was more or less a surrogate granddaughter had begun to horde food in her bedroom and stopped bathing.
It is important that the most pressing concerns are addressed quickly. Some of that only requires a caregiver to drive around a neighborhood for a few minutes to pick up a a loose dog, but some will require medical interventions or other professional help and assistance.
With that being said . . .
8. What resources are available?
Humans are not supposed to do any of this alone. It is not possible, and we are never responsible for taking care of every single need of any other person. We are never responsible or expected to take care of even a single need of another person. Some of us are nurturers, natural healers, problem-solvers or super organized. We have skills and gifts that can help us help someone else, but WE DO NOT HAVE TO DO ANYTHING WE DO NOT KNOW HOW TO DO OR ARE UNCOMFORTABLE DOING.If you want to help your aging or sick parent, spouse, friend in some way, do not feel that you have to attempt to do everything all by yourself. Nearly every county has a Council for the Aging. The local health department may have resources for support groups or home care.
Nearly every community has housekeepers, pet walkers/sitters that can be hired. There are mental health professionals, social workers, care coordinators, and elder care legal practices. Massage, reiki, Chaplins, ministers, pastoral services, charities and nonprofits are a Google search away. There is palliative and hospice care and most cancer treatment centers and oncology practices have multi- and interdisciplinary teams available for the holistic care of the patient and patient’s caregivers.
Never be too proud to ask for help. We are not meant to do this by ourselves. But we cannot avail ourselves with the help and expertise to better care for our people if we cannot have these conversations with them. It has to start with breaking the ice and broaching the subject of our mortality.
We should begin by being compassionate. While we have been taught to communicate sympathy by saying, “I’m sorry,” I do not recommend that we use that word, because we have also been taught to reply, “It’s ok.” Or “Thank you.” Or to in some way acknowledge the “sorry” person’s sadness or discomfort. The person who needs our compassion should not need or be expected to have the capacity to comfort us. Instead, we should start the conversation by saying something such as, “I really wish this wasn’t happening.” “I wish we didn’t have to talk about these things, BUT …” These phrases show compassion, but also bravery and fortitude. We cannot initiate this conversation and then back away or stop. It may be, probably will be, a discussion that will continue for several visits, because some of these answers will take time for soul-searching and reflection.
When I started my departure doula practice, I focused on the last three questions at all my visits. But as my knowledge and experience grew in my practice, so did the inquiry I made to better help and serve people in this space, and I must give credit to the many other caring professionals writing and working in this space for passing along their wisdom.
(This is available as a free PDF download on the website if you need to reference it to start conversations with your loved ones.)