Hospice - dying with dignity, at home. Pros and cons - and chocolate porridge.

Take home question - Is "aggressive care" really helping? as much as pomegranate peel and chocolate porridge might help?

A MedpageToday opinion article: Dying With Dignity: A Look at the Advantages of the Medicare Hospice Benefit, (medpagetoday.com), suggests that Hospice services are not used often enough or soon enough by physicians or families of critically ill patients.

Doctors tend to recommend more aggressive treatments and put it off until only the last few weeks of life. Two comments are worth a look. The first points out that diagnostic eligibility for Hospice care is sometimes manipulated to get someone on Hospice or to exclude them. An impression by families is a sense of Hospice being ‘giving up on the patient’, possibly fostered by providers with that sense that they want to keep tying with the patient. The comment by TimS closes with “If providers at all levels could paint Hospice Care as enhancing the remainder of a patient’s life instead of eliminating Care there might be more cooperation.” (medpagetoday.com)

And a reply to that by Susanna Levin, NP, adds a hopeful point: “True; and it helps to point out that patients in hospice sometimes live longer than those ‘continuing aggressive care,’ as well as living as best as possible in the time they have left.” (medpagetoday.com)

Dying With Dignity: A Look at the Advantages of the Medicare Hospice Benefit. (medpagetoday.com).

• Dying With Dignity: A Look at the Advantages of the Medicare Hospice Benefit. (medpagetoday.com)

“Giving up” on someone may be suggested by stopping the pursuit of aggressive treatment, however there is much that can be done with Comfort Care - if the family knows how.

As someone caring for a family member on Hospice - the issue there is that it is the end of many types of care that are covered by Medicare. The only funded appointments for Physical Therapy and other ancillary services are for educating the caregiver in how to provide service. Hospice is very nice at keeping the patient in their familiar surroundings with family, pets, visitors, all being on home-base. A large burden of care is placed on the family caregivers and that may not be emphasized enough when telling families about the service. Other care appointments are fully paid for though and adds up to a little over $4000/month for my bedbound father. A nursing home for him would cost about $8000 per month and he wouldn’t be with his cats or wife. If she were in a nursing home it would be in a different wing and also cost about $8000 per month - if beds are available. They are together daily instead of only visiting a little with help from a visitor or staff member.

Some budget for private duty aides to help with the daily tasks that the Hospice visit don’t help with is sensible unless there is plenty of family to take turns. As a dietitian thrown in the deep end, the amount of personal care expected of me was a lot of time in addition to making meals, cleaning, doing laundry, etcetera. Hiring aides can help, but suddenly you are now a staff manager and trainer. Senior Citizens hiring aides for themselves would also have to be the staff manager and trainer. The aides are minimally trained for filling in all the needs of a care home facility - which is what the person’s home has become.

The aides can help with meals but only at the skill level they happen to know. Overcooked, undercooked? Heat and serve tends to be easiest but that is a lot more expensive to buy deli food or takeout or processed boxes, cans or frozen meals, compared to making bean soup from scratch or cooking a pound of burger and freezing smaller meals from it. It would help patients and aide facilities to have some menu guidance with recipes and pantry and shopping lists for healthy simple meals. Patient daily care logs are also a tool of care facilities that would help a family and their varied aides have streamlined communication and a log of how the patient is eating and feeling to refer to as a week or month flows into another. I have created and been using weekly pages for meals & meds, and personal care & schedule of aide shifts or other appointments.

If processed foods are used, then tips for boosting protein and nutrients would still be helpful as many canned soups or frozen meals may be low protein compared to what a patient or Senior Citizen needs. The appetite drops but the nutrient needs tend to increase in chronic health conditions or for older adults - zinc and protein in particular. Older adults (over 65) may need double the amount of zinc as the current guidelines suggest - which are the same for all age adults.

Thymus function can be maintained or restored with the doubled zinc compared to what is seen in typical aging with the current guideline (~18 mg zinc/day). Fifty milligrams of zinc and adequate, 2 to 3 milligrams of copper, might help Senior Citizens more than the lower recommendation.

Low zinc also tends to cause microbiome dysbiosis (Tako, Koren, 2020) and may cause elevated IL-6 levels. See this post: Zinc Deficiency and elevated IL-6 > mast cell degranulation > histamine excess; also > microbiome dysbiosis. (substack.com)

To prevent muscle loss, older adults need to have more protein at breakfast and less at dinner than the standard US diet tends to have. Aim for about 20-30 grams of protein at each meal, or divided between snacks too. One egg or ounce of meat is ~7 grams. A half cup of beans varies from ~ 7-9 grams of protein but also has carbohydrate calories that meat or eggs doesn’t have and fiber, so it is more filling for a tiny appetite. Garbanzo bean flour can be a way to boost protein without adding as much fiber or using the more typical dairy based skim milk powder.

I share the recipe for my dad’s breakfast porridge, chocolate with cocoa powder in an initial post and a follow up with more detail about hospice and cancer.

• Cancer protocol? or yummy chocolate porridge? also a link to a Japanese official getting firm and a history of the Gates family by A.M. Ogynu., Jan 2, 2023, (substack.com) - the follow-up.

• A Tale of Two Porridges - Translational Medicine?, June 14, 2022, (substack.com). Synopsis - both parents were being made chocolate porridge by my father that he liked, but which was low protein, for a daily breakfast. It had several histamine trigger ingredients that made my mother’s histamine problem worse and her anxiety was so bad that then made hi. It turns out that Alzheimer’s hippocampal damage seems to be a target of histamine excess and mast cell overactivation. Better diet, better mood, less inflamed, less continuing damage. I increased the protein in both of their porridges and made different versions without the favored histamine ingredients in my father’s version.

I also added my pomegranate herb tea as part of the liquid and more recently a 1/4 teaspoon of pomegranate inner peel dried and powdered. It helped with worsening edema and since starting that he’s been a little more himself again. He is failing, losing weight, partially paralyzed from a cancer metastasis pressing on his spine. But he is home, with his cats, his wife, his bird feeder, and his morning chocolate porridge - 14 months on Hospice porridge. Suddenly dying of cancer can have different meanings. I did fear that he was dying when he was first released from the nursing home into homecare with CoV/Omicron maybe - outbreak at the nursing home that we all got too.

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And a link about moral injury in an interview with Wendy Dean, MD, by Henry Bair and Tyler Johnson, M on The Doctor’s Art podcast. She started out in surgery, switched to ER, and then went into psychiatry. Opened a private clinic and was doing well but then moving elsewhere found it too expensive to have a psychiatric clinic that provided both counseling and medication management. It was only affordable as a medication management clinic so she stopped as that wasn’t what she wanted to provide patients. (MedPageToday.com)

Overhead and insurance costs are prohibitive. I personally don’t want to try to see clients without more support staff to help me. Patients may not realize how many hours are spent outside of an appointment with them in order to provide a ‘clinic service’ with medical records, billing, scheduling, follow-up.

Wendy Dean, MD describes moral injury as a term developed out of work with military personal returning from action with symptoms that didn’t respond to PTSD care. She describes moral injury as ~ betrayal by superiors/system/government, leaving “a soul wound., And from researchers working with a military population - “it’s [moral injury is due to] perpetrating, bearing witness to or learning about acts that transgress deeply held moral beliefs and expectations.” (MedPageToday.com)

Moral injury - a sense of guilt or shame over knowing you could do more but something is preventing that, policy, insurance, or a male-dominated field that is not accepting of a female physician is discussed also. This can add to symptoms of Burnout. I have a brief post with some resources about burnout here: Peace is Having Enough Employees for the Job, (peace-is-happy.org)

Wendy Dean, MD thinks we need to address both burnout - workload, autonomy, etc, and moral injury - a need to repair relationship damage caused by administrative or other reasons.

• Why It's Hard to Put Patients First — Wendy Dean, MD, discusses moral injury and burnout in healthcare, by Henry Bair and Tyler Johnson, MD May 30, 2023, The Doctor’s Art, a podcast, (MedPageToday.com).

Take home points in my opinion:

• In order to have enough employees for the job, there has to be enough budget to pay them - so if that is not happening then the work needs to be simplified, or the budget increased when workers are being overworked.

• In order to have happy employees, you need to not ask them to participate in actions that go against their moral values. In medical care the most basic are “First do no harm” and “informed consent”.

Pomegranate peel, 1/4-1/2 teaspoon, a few times per day, is really simple, safe, and very low budget compared to a million-dollar aggressive cancer treatment that is harmful to the body and not helping the underlying problem of dysfunctional cytoplasm and methylation cycles and gut dysbiosis. It is a diuretic and the hydrolyzable tannins are healing in small amounts and an irritant in large amounts - informed consent means sharing the risks as well as the benefits. Use it in moderation earlier in the day with plenty of water. Someone on a catheter would just need to drink plenty of water. In animal studies on cancer dosing was around the clock rather than once a day and the total amount used would be significant. Not the 1/4 teaspoon once a day, more like a 1/4 teaspoon every 6 hours. Fat content in the diet and low protein and other factors are also involved as potential causal risks that would need to be changed to pursue health.

By the time I lost my public health job, I was kind of glad to lose it, because then I could stop talking about fluoride as a “health recommendation”. I did have symptoms of burnout and had been overworked for a long time. My choice in part though, to stay and help someone through my lunch break, or stay over a little longer but not charge for overtime that wouldn’t be approved.

Disclaimer: This information is being shared for educational purposes within the guidelines of Fair Use and is not intended to provide individual health guidance.