WHY NOW? In-home Hospice Care for Sumi

Sunday, November 26, 2023 - 12:00 pm
37⁰F (3⁰C) - Light flurries
 


Hope you all had Happy Thanksgiving. Great weekend for the Michigan football fans with a three-peat win over Ohio State! Go Blue all the way!
 
Sumi is slowly changing and has entered a new phase. She is under In-home Hospice Care as of November 16.
 
This is a big change but nothing drastically should alter in her medical care, safety, well-being and her life span.
 
Knowing that loved ones of some of the caregivers in our support group are in Hospice Care, I was pondering if Sumi would qualify for Hospice Care. And if she does, would it be a good idea to have her in Hospice Care.
 
On November 7, I reached out to Hospice of Michigan (HoM), a non-profit Hospice service provider, to see if Sumi would qualify. They sent a nurse to our home for Sumi’s evaluation on November 10. The nurse had obtained Sumi’s medical records form her primary care physician (PCP) and based on the history of Sumi’s Alzheimer’s disease, which is considered terminal, Sumi got qualified.
 
Isn’t it ironic that in the eyes of nature, we all are on the path of being terminal at some point. However, in Medicare’s eyes, when the path is known it is considered terminal, and the unknown path - non-terminal!
 
Things were moving fast. For me it was a surprise that Sumi qualified for Hospice Care. As Sumi’s Guardian and having DPOA (Durable Power of Attorney) it was up to me to decide if this was the right time Sumi should be in Hospice Care. I was not prepared to make a quick decision and told the Hospice nurse I needed more time. I wanted to investigate another alternative to Hospice Care – Palliative Care, and understand their pros and cons. I asked the nurse if she could put me in touch with the Palliative nurse. It so happened that HoM does provide Palliative Care and a Palliative Care nurse called me on November 13.
 
Then, I did online research to understand the differences between Hospice and Palliative Care and created a matrix (attached herewith) to compare various items/scenarios of care. I also got input form Sumi’s PCP, other knowledgeable people who are in the aging field and my caregiver friends whose loved ones are under Hospice Care. Since all hospice is palliative but all palliative isn’t hospice, the unanimous recommendation was to put Sumi under Hospice Care. Hence, Sumi in Hospice Care from November 16.
 
The significant differences between Hospice and Palliative Care are:

• Hospice is non-curative meaning all medications for the disease for which Hospice Care is given need to be stopped. As Sumi is not on any medication for Alzheimer’s or, for any other medical conditions, this was a moot point. Palliative Care is curative.
• The Hospice doctor, nurse and social worker would take over Sumi’s treatment from Sumi’s primary care physician and her neurologist. Again, as Sumi is not under any active medical care from her PCP or neurologist, I reasoned it would be okay for the Hospice doctor and nurse to be responsible for Sumi’s medical needs. In Palliate Care, you retain your current doctors.
• For the family member’s well-being, Hospice provides a respite care for the six consecutive days (five nights) per month in a nursing facility of HoM’s choosing. A chaplain is also assigned for emotional and spiritual support. Palliative Care does not provide respite.

Hospice Care has many stigmas and negative connotations attached to it. For most people, it is considered an “end-of-life” stage or when people are “actively dying”. There are many myths attached to it and from my research, I found that:

• Myth #1: Hospice is just for cancer. It is not. It is also for dementia, heart disease, COPD (Chronic Obstructive Pulmonary Disease) or other terminal conditions.
• Myth #2: Hospice is a “death sentence”. On the contrary, support of Hospice Care can help people live longer.
• Myth #3: Under Hospice, you lose autonomy of care. Another, point which helped me make my decision is the flexibility of managing Sumi’s care by allowing us choices with self-determination and empowerment. I could have Sumi opted out of Hospice Care whenever I want and have her re-admitted in Hospice Care with the recertification.
• Myth #4: Hospice Care costs extra. It is an already paid-through-taxes, Medicare health care benefit that covers services such as, Durable Medical Equipment (wheels chair, hospital bed, Hoyer-lift, Broda chair and so on), medications, some medical supplies, respite and volunteer care.

Based on above, I reasoned starting Hospice Care sooner was a prudent step. If Sumi’s destiny has certain life span based on her physical, emotional, mental and brain health due to Alzheimer’s, having her on Hospice should not have any impact on her longevity – her death is not hastened or delayed and the nature is allowed to take its course in the comfort of our home without pain or suffering..
 
In short, in addition to Sumi’s current caregivers, I am getting another layer of 24/7 on-call comfort care and support for Sumi and new connections and emotional support for me thorough Hospice Care team. We already had home visits form a case manager nurse who will visit every week and a social worker who will visit every two weeks. A chaplain is scheduled to visit next week.
 
Time will tell how the decisions made now will affect Sumi’s future care and comfort.  

#	Items	Hospice Care	Palliative Care
1	Health Condition	Terminal	Serious, but not terminal
2	Time frame	End-of-life Stage. Normally six months or less. But it could be longer (I was told by the social worker that some people with dementia have lived two to three years after being in the Hospice)	Anytime
3	Treatment	Comfort Care by managing pain. Normally, non-curative	Pain management, curative
4	Where	Home (anywhere you call home) Assisted living facility Nursing home Hospice facility Hospital	Home (Anywhere you call home) Assisted living facility Nursing home Palliative Care clinic Hospital
5	Doctor	Patient could have Hospice doctor work with his/her attending physician if that is desired. Otherwise, Hospice doctor is assigned in lieu of the attending physician and any other specialist doctor	You can keep you current doctors
6	Team	Nurse (weekly), social worker, chaplain, volunteer, music therapy and pet (dog) visit	Nurses, Social Workers, Chaplain, Dietitian (2 to 3 months)
7	Respite	Six days (five nights) consequently per month in a skilled nursing facility or a hospital	No respite
8	Medications	Disease specific medications are stopped. (i.e., primary disease for which Hospice was granted) Situation based; non-disease specific new medication could be prescribed	Continue all current medications
9	Durable Medical Equipment (DME) and some medical supplies	Medicare qualified (Hospice uses Medicare)	No
10	Non-disease specific hospital treatment	To get hospital treatment (surgery or other medical treatment), Hospice must be stopped. After the surgery and during the recuperation period, Hospice could be activated again	As Palliative Care has curative intent, no issues on getting hospital services
11	Emergency Room (outpatient basis)	First call Hospice for emergency situation. With their consent or sign-off alternative treatment is possible	No change
12	DNR – Do Not Resuscitate	Resuscitation permissible On a case-by-case basis	Resuscitation permissible
13	Vaccinations (Covid, Flu, Shingles, etc.)	Hospice does not provide but one can get vaccines directly from a third party (CVS, Costco, etc.) who would bill Medicare directly	No Change
14	Dental, dermatologist, podiatrist	Treatment permissible directly outside of Hospice	No Change
Hospice is inclusive of palliative; all palliative isn’t hospice

A comment from Jignasu Sheth.
 
KC, my friend,

Your unselfishness dedication is an inspiration to all of us.

I would say it is the right time for Sumi to be in hospice care. Saying you have done too much would be an understatement. Once again you don’t stop at just doing “The Thing.”  You thoroughly research, analyze the pros and cons, bring clarity and then implement. Also, in yet another step beyond:  You educate us.

When someone is down, I refer them to the My Journey with Sumi website for inspiration. I also share your blog messages to many and explain this is not just about Alzheimer’s. It’s about an approach to living through difficulties. It's about focusing, creating a process, converting challenges into opportunities, problem solving, and flourishing through THINKING.  

I, too, read the online Bible you have created about caregiving to center myself as required.

Bravo and God bless you. Stay happy and healthy,

Jignasu Sheth