The Story of My First Cousin
Let me tell you about my first cousin, Howard. He loved mini-bikes, dirt bikes, and motorcycles. When I was just a kid, he introduced me to James Brown’s music – “Papa’s Got a Brand-New Bag.” “Get Up Offa That Thing.” “I Feel Good.” I remember Howard playing this funky music in the front room of his dad and mom’s house (My uncle and aunt’s house) and I danced to it. Ha! Ha! Wish you could have seen me (Not!) When Howard was old enough to drive, guess what he purchased? Yup! You guessed it – a used motorcycle.
As a middle-aged adult, Howard was diagnosed with multiple myeloma – a cancer that forms in a type of white blood cell called a plasma cell. Healthy plasma cells help us fight infections by making antibodies that recognize and attack germs. In multiple myeloma, cancerous plasma cells accumulate in the bone marrow and crowd out healthy blood cells. Rather than produce helpful antibodies, the cancer cells produce abnormal proteins that can cause complications.
The overall 5-year survival rate for people with multiple myeloma in the United States is 55%. That means that only 55% of people are still alive 5-years after diagnosis. Howard lived 9 years after diagnosis. In many ways, he beat the odds!
In the last stage of his life, Howard was hospitalized due to very painful bubbles of fluid or pus on his lower legs (similar to boils). However, these “bubbles” were larger than boils and were not red like boils. To be honest, the doctors at this local hospital had not seen anything like this before.
One day while I was visiting him in the hospital, Howard’s oncologist and a younger resident or fellow came by to see him. The oncologist said something like this while smiling: “Howard, you are our poster child for beating this disease! We love you man! When you are done with our experimental chemotherapy and get back to riding your motorcycle, you are going to feel so much better.”
I knew better. I had seen Howard’s medical chart. I saw how his body was failing him. I saw how thin he was – how gaunt. I knew the odds were stacked against him. I knew that death was lurking nearby. Yet, no one told him. Howard was not ready to die in my opinion. So, while the oncologist was talking, I whispered something in Howard’s ear about the oncologist not telling him the truth. I wanted Howard to know the truth about his situation. I think the oncologist heard me.
The oncologist stopped smiling and stopped talking in mid-sentence. He pointed to me and asked Howard, “Who is he?” Howard replied to the oncologist, “He’s my first cousin Tim. He teaches Death and Dying at the university.”
When the oncologist heard that, he immediately froze. I did not know I was that scary. He cleared his throat. Coughed. Looked down at his feet. Kind of kicked at the floor. Then he looked back up at my cousin. To my amazement, here is what the oncologist said:
Howard, your cousin is correct. Our experimental chemotherapy is not going to make your life any better. To be honest, it will take away from your quality of life. In all honesty, you probably are not going to leave this hospital alive and if you do, you certainly will not ride a motorcycle again and you may not even walk again. We may add a few days to your life but hospice will add life to your remaining days. I recommend that you call hospice today.”
Wow! I was amazed! A physician actually admitted that he was not telling his patient the truth! His comments reminded me of a study that I read that reported 69% of patients with incurable lung cancer and 81% of patients with incurable colorectal cancer who received palliative chemotherapy were not aware that the chemo was unlikely to cure their cancer. No one told them the truth. As I said in a recent podcast episode: “How can patients prepare to die if they do not even know that they are dying?” https://1795group.com/podcast/
I give a lot of credit to this oncologist for leveling with Howard. Unfortunately, the oncologist’s prediction was accurate and my cousin died in the ICU just two weeks after this encounter. Howard never left the hospital alive.
Where We Die
In the past, say 200-300 years ago, a person died at home and the family took care of everything including cleaning the body, dressing the body, showing the body in the home, building the coffin, and digging the hole. Not so today. You can hear more about funeral homes on a recent podcast that I hosted: https://1795group.com/episode/episode-3/
Today, when someone we love dies, we simply pick up the phone and call a funeral home. They do the rest. We pay funeral homes an average of $8,000 for embalming, flowers, casket, obituary, a one-day service, vault, and burial. A major transition has occurred in the role of the family.
We also see a transition in the location of death today. There is a shift away from hospitals, nursing homes, and long-term care facilities and toward the home of the decedent. The percentage of deaths from all causes that occurred in a hospital decreased from 48% in 2000 to 35% in 2018. During that period, the percentage of deaths that occurred in the decedent’s home increased from 23% to 31% (Morbidity and Mortality Weekly Report, 2020). Because of the age of patients and their needs for skilled or hospice nursing, the percentage of deaths that occurred in long-term care facilities (e.g., hospice, nursing home, long-term care) increased from 23% to 27% (Morbidity and Mortality Weekly Report, 2020).
The Increasing Role of Hospice
Hospice care is designed for the person who has 6 months or less to live. Care is provided to all ages, races, and ethnicities. However, people over age 65 seem to be the dominant demographic. A total of 1.61 million Medicare beneficiaries received hospice care in 2019, an increase of 3.9 percent from the previous year (National Hospice and Palliative Care Organization, 2021). In 2019, almost 54% of white Medicare beneficiary decedents used hospice care; 43% of Hispanic Medicare beneficiary decedents did so; and 41% of Black Medicare beneficiary decedents did so.
The problem of late referrals to hospice from physicians continues to be a problem. Late referrals to hospice lead to unnecessary pain and suffering among patients. The 2021 report written by the National Hospice and Palliative Care Organization (NHPCO, 2021) indicated that 10% of Medicare decedents received hospice care for two days or less; 25% of beneficiaries received care for five days or less; and 50% received care for 18 days or less. These stays are too short for patients to fully benefit from the unique, person-centered, interdisciplinary care provided by hospice.
Have Not Done Advance Care Planning
Unfortunately, most Americans have not done advance care planning. My own research proves this. In a random sample of Americans that we published in 2017, only 25% of Americans had completed advanced care planning, which included having a conversation with loved ones about their wishes (McAfee, Jordan, et al., 2017). https://pubmed.ncbi.nlm.nih.gov/28142319/ The results for Hispanics and Blacks were far worse.
Those who work in the hospice field see this ever day – even among patients who have 6 months or less to live! Why? I think the avoidance of such topics points to American culture’s death-denying and death-defying attitudes. We just do not like talking about death and dealing with it head on.
What is involved in doing advance care planning?
I teach that one should do the following:
- Talk to your physician, loved ones, and family members about your end-of-life wishes.
- Complete a Living Will. Yes, even college students should do these things.
- Complete a Durable Power of Attorney for Health Care document.
- Complete a Do Not Resuscitate Order (DNR), especially if you are terminal.
- Complete an organ donation registration form.
- Decide if you want to be buried, if so where, and what your monument will say.
- Decide if you want a traditional funeral service. If so, where? Plan the details of the service.
- Pay for your funeral, burial plot, stone memorial, or cremation in advance.
- Give copies if your advance directive documents to your family members, loved ones, personal physician, attorney, and religious expert.
All of the things above, except # 8 are FREE! You do not need to hire an attorney to do them. The forms are readily available for free! The forms need only to be signed by two witnesses that know you well who are not related to you by blood or marriage. It is all FREE!!
If you have done these eight things, then you are a death-accepting person. If not, then you have some work to do. Why leave these things for grief-stricken relatives and friends to plan and pay. You do it! Take charge of your life and your death.
If you would like more information about hospice, advanced care planning, or any end-of-life issues, please contact me.