For the Greatest Generation and the Baby Boomers, End of Life Healthcare choices are not just a mental exercise. The real-life drama and the trauma of having to make decisions for our moms, dads, spouses, and ourselves are issues we are facing right now.
I was a hospice nurse for seven years and saw and learned a lot about what choices families face as the end of life arrives. I’ll review a few of them here. I hope they’re helpful.
STAYING AT HOME: IT’S NOT ALWAYS SAFE
Most folks of any age would rather live out their lives in their own homes. But choices need to be made when someone’s mental status changes significantly and they can’t, for instance, remember to take their mediations or pay their bills. Ditto for when their mobility is severely challenged and can’t make it to the market or cook safely. It’s also not hard to imagine the dangers of living alone with diseases like advanced heart disease, COPD, osteoporosis or cancer.
MAKING STAYING HOME POSSIBLE
For folks who just need a little help, having a caregiving friend or family member check in on them a couple of times a week is helpful. A visit to bring groceries and take out the garbage not only is a good way to do a safety check but also lets the loved one know they’re not forgotten.
Depression is common in retired folks who live alone and can’t get out much. If family doesn’t live in town, check out…
- Their place of worship. Parishes often have a ministry that can help-out.
- Senior Services in their county/region. They can connect you with available resources.
ASSISTED LIVING / NURSING HOMES
There are also Assisted Living communities. They’re pricey, but a good option for those with resources and enough functionality to maintain some freedom. Long term care facilities, or nursing homes are an option for those with minimal functionality.
The key to either is finding a good one, a good fit. Make sure to check it out and do a ‘sniff’ test. If you walk in and the aroma is unpleasant – it’s a no. You can call, but it’s better to visit regularly, and on different days. Staff does take better care of patients when they know families check in often.
DIRECTIVES IN ADVANCE OF END-OF-LIFE
It’s unpleasant, but have that hard conversation about what someone wants in the event they can no longer participate in a decision for themselves.
“Mom, we want to make sure we honor your wishes if you can’t speak for yourself, so let’s chat about your thoughts on what you’d like if something life changing should happen.”
A loved one’s mental status is as important to consider during this time as their physical health. People don’t want to face their mortality. It’s difficult at any age. When your health is failing it can become very frightening. I’ve seen patients become very angry at their loved ones for bringing up the topic. It can make for a nightmarish situation. That’s why I recommend bringing up the topic as soon as possible when their health is still good and hard choices don’t need to be made immediately.
A visit to the doctor or conversation with a pastor can help this conversation along. A Living Will and/or Durable Power of Attorney for Healthcare can save a lot of heartache. Do it sooner rather than later.
HOSPICE: HOME OR AWAY
Let’s say Dad has had a significant stroke or advanced prostate cancer. The doctor has given you the bad news that he doesn’t have more than six months to live. If Dad wants to continue to fight it to the end? Fight it! Honor his wishes as long as possible. Let him know he is still in control of his life and health care.
Hospice care differs from regular healthcare in three primary ways:
- Your hospice doctor and your regular doctor (if you have one) certify that you’re terminally ill (with a life expectancy of 6 months or less).
- You accept palliative care (for comfort) instead of care to cure your illness.
- You sign a statement choosing hospice care instead of other Medicare-covered benefits to treat your terminal illness and related conditions.
Hospice is not a place, it is a level of care and it can be carried out at home. You will a doctor or hospice nurse to refer someone for hospice care. They will be evaluated and care can occur in a facility or at home. Medicare routinely pays for skilled nursing on a regular basis in hospice conditions. They do not provide 24 hour care unless end of life is imminent as determined by a physician.
MISCONCEPTIONS ABOUT HOSPICE
In my role as a hospice nurse I would typically go in and discontinue some medications. For example, a patient who has less than six months to live doesn’t really need their Lipitor anymore. Ditto for a number of other medications. Focus is on comfort for the patient which includes getting their pain and other symptoms under control. Nausea and constipation, especially when narcotics are needed to control pain, should be addressed as aggressively as pain! Nutrition should never be forgotten. And many hospice agencies also offer social workers to help the family navigate the system during an already maddening time.
At the end, the doctor and nurse can help ensure the patient is as pain free and calm as can be expected. I have always hated hearing about when some family members felt they needed to be the one to help the loved one pass on because they were in so much misery. A good hospice nurse will help determine what dosage and frequency of medication will help the patient be comfortable, and sometimes relaxed enough to pass when the time has come. Strangely, many patients can’t pass if they are in too much pain or very anxious. Some can’t pass alone. Some can only pass if they’re alone. Everyone is different and a good hospice organization will help all involved when the time come.
DO THE HARD THING EARLY
No one gets out of this world alive. But we do have choices. Don’t avoid them.
From the Editor:
Facing the hard choices that come with end-of-life can be made easier with understanding. We have a few articles that might help empower you to have the conversations you need to or get the information to make the right choices:
“Choosing to Die with Dignity” by Jennie Lucio
“Managing Chronic Illness: a Guide” a webinar by Patients Rising University
And of course, if you have questions, you can always ASK US ANYTHING.
Lisa is a recently retired RN who practiced in several areas of nursing including medical/surgical, psychiatric, and hospice. She is also graduate of the University of Michigan in psychology and trained to a Masters in Social Work. Lisa is a monster football fan living in Southern Illinois with her daughter, who serves in the USAF and is also pursuing a nursing degree. They have three fur babies who they love and spoil daily.