Because the holidays carry so many fond memories for most, there's an underlying supposition that a hospice patient can and will survive until all the festivities for the family are completed. Any negative event on a birthday or holiday can leave one with mixed feelings about how and, in some cases, whether to celebrate or not. There have been many stories of patients declaring the intent to live through the holidays and demonstrate the ability to‘choose the day of death.” It has been labeled the “Death Dip”, a reduction in deaths in nursing homes and hospice care.
It’s widely accepted in the hospice care community that patients choose the day of death, no matter what time of year it is!
But this blog will talk about being prepared for the possibilities, both of them!
There have been studies proving an increase and studies finding the opposite. Many hospitals and agencies increase their available staffing, especially in the ER, and in some places, that’s been an advantage, and in some, it proved unnecessary. In Australia, a study was done assessing cardiovascular and stroke deaths over holidays from 1989 to 2015, and the results showed no statistical evidence of an increase in deaths during the Christmas holiday period. A study from Ohio ‘busted that myth’ examining more than 300,000 cancer patients, finding no increase at holiday time.
On the other hand, some showed a significant increase in deaths on December 25th and 26th and on January 1st. A 2010 study showed that for all the major diagnoses, circulatory and respiratory diseases, neoplasms, endocrine/nutritional/metabolic diseases, and digestive diseases, in the two weeks starting with Christmas, there was an increase in deaths above and beyond the normal winter increase. They concluded that “Christmas and New Year’s appeared to be risk factors for deaths from many diseases.”
Increases in deaths over the holidays have been documented by Obit writers, and one that was surprising was about Alzheimer’s patients. One would think that they didn’t experience stress, but their death rate due to cardiac causes was higher over the holidays, as well.
How do you prepare yourself if your loved one is very sick this time of year? The best gift you can give the whole family, especially if hospice has been talked about and postponed, is to have them admitted to home hospice care. Nurses, social workers, and chaplains are available daily to answer your questions and give you the education, meds and emotional support to be prepared. In every case, grieving begins way before the death happens, and hospice staff know how to respond.
Based on the diagnosis, nurses will explain what symptoms to expect and educate the family or the nursing facility staff on how to use the meds. The meds that could potentially be needed will be provided on day one, and additional meds can be delivered to your home. Instead of waiting days to reach a doctor or pharmacy, the agency has those arrangements and will take care of it within hours. You will have an emergency number with experienced hospice nurses answering your call 24/7. Hospice agencies always have staff available to make visits every day of the year. The holiday stress and caring for a sick loved one can be overwhelming. The social work and chaplain staff know how to help you with the anticipated grief you might be experiencing.
You can even determine if death seems near by noting the behavior of a verbal patient. The phenomenon known as Pre-Death Anxiety can present at any time and often heralds that the patient subconsciously knows that death is near, often within 2-3 weeks. They suddenly become more needy for attention and companionship. The word ‘anxiety’ in the label can be misleading because the patient is often very calm and sure about what they want or need. One thing that is clear to families and caregivers is that the patient requests things and complains about things that are real, but the expression of these needs follows one right after the other and is accompanied by comments like “I’m so glad to see you” or “come sit with me a minute “ or “do you have to go?” The family or caregiver thinks; ‘I was just in there, and we did that already.’
It becomes clear that the patient does not want to be alone. They also need reassurance that, on some level, they are aware that their leaving is happening and that they need to know that everyone will be okay after they leave. A parent doesn’t want to burden a child and vice versa, but they don’t quite know how to ask those validating questions, so it shows in their request for time and taking care of details. This doesn’t necessarily mean that you must stay with them continuously, but they ask for someone to be with them more than before. This change may only be for a few hours or days, but the family and caregivers do need to change their schedule. When this phase is complete, the patient knows they can let go. The family comes together, so they are present to talk about everything and anything that gives the patient pleasure about the life they lived. This is a good time to bring relatives or best friends from across the state or country. This also is a time when the staff members will inform families that, if they haven’t done so yet, it’s the time to say, “It’s okay to go, “ or offer validating comments about how great relationships were as a spouse, child, or extended family. They need to know that you will miss them but that you will be okay when they’re gone. You can talk about what their ‘legacy’ will look like.
It’s not uncommon for a patient to die the same day as their hospice admission. The reduction in stress and worry about what to expect and the reassurance they get from the staff that the family will be cared for can help them feel free. Just like dealing with the ‘pre-death anxiety’ stage, this is all about giving them what they need so that they can choose when to go. With hospice care, in many cases, your family member can be home for the holidays. It’s worth investing the time to explore it. If you and your family are grieving and need additional support due to the loss of someone this time of year, many hospice agencies will give you support through 1:1 or group sessions.
If you’d like to know about the qualifications for hospice, please see the links below. The regulations for qualifying are strict because, over the years, many people received services for lengthy periods, and a lot of time and money was spent on someone who did not need end-of-life care. Some people simply expect that agencies have many, many nurses and that their compassion for a family dealing with a dying loved one is enough to get the service of hospice. The reality is that there isn’t enough money or manpower to do that, so limits have to be set so that the money from Medicare, Medicaid, and insurance companies can be wisely spent.
You qualify for hospice care if you have Medicare Part A (Hospital Insurance) and meet all of these conditions: 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 comfort care (palliative care) instead of care to cure your illness. You sign a statement choosing hospice care instead of other Medicare-covered treatments for your terminal illness and related conditions. You can usually get Medicare-certified hospice care in your home or another facility, like a nursing home. You can also get hospice care in an inpatient hospice facility.
The following document is from another institution I have no affiliation with, but it is agraphic and shows the diagnostic criteria and the palliative performance scale.
To purchase Barbara's book, Demystifying Hospice, you can purchase a signed copy or downloadable PDF at Author Spots or a digital copy on Kindle Ebook
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