Archive for category End of Life Care
The AMA has 7,800 codes for all types of medical services. Discussion of end-of-life care has been considered part of routine primary care. Now, the medical-industrial-complex wants another fee for the service of discussing this topic.
The service in question is “Advance Care Planning“. Certainly, a good idea — a health care provider should be talking with patients about end of life issues. We all die, that seems obvious, but someone should ask: “when it does happen where do you want to be, who would you like to be there, and have you told someone about your wishes for medical care at the end?”
Virtually anybody can ask those simple questions. Sure, getting up the nerve to ask the questions is hard for family members. And, sometimes there is no family to discuss the questions or the answers. Like other issues of health care, the primary care provider should broach the questions and record the answers and facilitate discussions with the people close to the patient. It’s not a question that needs repeating at every visit, but periodically as conditions change. Is the discussion important? Absolutely. Soap operas are not where the answers exist.
There is an undercurrent of distrust. The distrust is because the medical profession seems so motivated by profit they may do unnecessary treatments when death is near. Thus, to avoid unnecessary treatment a person must clearly state what medical services are wanted at the end of life.
The issue is clouded by the huge shift in the doctor-patient-relationship over the past 10 years. The doctor who might see the patient in the primary care outpatient clinic is not the one who will see the patient at the care center, or the oncology clinic or be the admitting physician at the hospital. Unless the patient, family and friends have a clear grasp on what the patient wants the information may be lost or be misrepresented. It would be incorrect to think the medical record will be universally available — it’s not now and will probably not be that way for decades (if ever).
An equally difficult problem is the “grey area” between care that works and futile care. “Is this the end?” The care provider who is asked that question is really on the front line, not the primary care provider who discussed the issue 10 years before.
The elephant in the room is the cost of care. And, the fact many people do not have the resources to pay tens of thousands of dollars a month for care when their income is just Social Security. Very few people say “do everything”. But, can a person with no resources actually say “do everything” and expect that to happen?
The bottom line: the new CPT codes pay for something a primary care provider should already be doing so the additional cost is not needed. If the discussion is not happening then it is a case of poor quality primary care. Paying more never makes low quality care better, it just makes poor quality care more expensive.
An end-of-life discussion with a knowledgeable provider tends to set expectations in a reasonable range. Satisfaction with medical care is often about meeting expectations, so this is important for the patient and the care providers. It also should set expectations for friends and family — after the patient dies they are the ones who decide if expectations are met.
Too much treatment is dangerous just like too little treatment. Treating blood pressure too early or too aggressively increases the risk of death. Treating elderly patients with diabetes with too much medicine increases episodes of low blood sugar that damage the brain and leads to broken bones from falling.
In 2014 the national guidelines for blood pressure treatment were changed to allow a higher blood pressure. Similarly, a recent study found increased mortality for elderly patients treated too strongly for diabetes.
This is not rocket science. Imagine a blood pressure medication that could lower the blood pressure to any level. Knowing that zero blood pressure means you are dead, it stands to reason there is a point where treating blood pressure goes from helpful to dangerous. Same for blood sugar.
Sometimes this problem is called “treating the test“. In essence prescribers just look at the numbers and write a prescription, but ignore symptoms of weakness or spells of altered consciousness. Hypertension and diabetes are good examples but this happens with lots of other conditions.
Examples of over-treatment include treating a sore throat with antibiotics, treating mild asthma with oral steroids, or treating an elevated lyme serology test with antibiotics. It takes time to make a correct diagnosis and time to explain treatment to patients — some health care providers simply don’t take the time to do either.
Most drugs have a “therapeutic window“. As long as the window is open the patient gets benefit. But, the window closes due to side effects and advanced age.
If a person is over 80 or in poor health excessive medical treatment is a substantial risk. In this group even the thought of a low cholesterol diet is foolhardy. It’s all about risks and benefits.
Severe dementia comes to an end. And, as the end approaches the POA (the person designated as the health care “power of attorney”) must face some difficult questions. Be assured, such questions are not new. Ethicists and philosophers provide some guidance:
- Understand death is near.
- Be conservative — try not to interfere with a natural death
- Comfort should be the goal.
- Avoid tests, treatments or procedures unrelated to comfort.
- Approaching death creates emotion. But, strive for logical decisions.
- Discuss the above 5 principles with health care providers and family.
- Keep in close contact with family members.
When is dementia severe? First, it is not something that happens suddenly. There is a progression from mild, to moderate to severe that develops over months to years. Finally, the person looses connection to reality and does not remember who they are, where they are or what time it is. Physically, they they loose coordination, slow down, get weak, don’t talk clearly, frighten easily, anger easily, choke easily, fall easily, and often loose control of bladder and bowels. Eventually, they need help even with the simple activities of daily living: like dressing, going to the bathroom, bathing, feeding themselves and even sleeping at the right time.
What naturally happens? In a modern care setting the most common final events are pneumonia (from poor swallowing), urine infections, strokes, infected bed sores, blood clots, and falls with head injury or broken bones (like a hip fracture). Often, a demented patient will have one hospitalization after another. The person never seems to fully recover. Any changes in environment, like a new room or new caregivers can drastically worsen the mental situation. Mental stability is aggravated by restraints or sedatives. In the end, the person may become unresponsive (a coma) and bodily functions stop.
Who can help the POA? Decisions by every POA will vary according to the situation and patient wishes. Hopefully, the POA had a discussion with the patient about end-of-life issues before severe dementia intervened. Most POAs will still ask themselves if they are doing the right thing. A discussion of medical facts with the primary care provider helps to put priorities in order. Social workers can be a world of help. Clergy often has a big-picture view that is very comforting. Palliative care programs (if available) can be a relief with a team of doctors, nurses and social workers to give support over long periods of time. When the patient only has a few weeks to live (according to the attending physician) then a hospice program can help in the final weeks at home or in a nursing home.
Even the best prepared POA runs into difficult questions:
- At the care center the patient’s hearing aid is lost — should it be replaced? Answer: probably not. It will likely just be lost again.
- The gastroenterologist office calls to set up a routine colonoscopy, when should it be done? Answer: skip the procedure. It will not make the demented patient live longer and the required sedation may be so disturbing it could cause hospitalization.
- The patient has no dental pain but the dentist suggests a new crown for a tooth. When to schedule? Answer: no pain, no procedure. Any procedure can result in hospitalization for minor complications. If dental pain becomes a problem sometimes a quick dental extraction is the easy answer.
- The patient becomes unresponsive (in a coma) at the care center. Should an ambulance be called? Answer: probably not. If a do-not-resuscitate order is in the chart and the patient is in no distress good nursing care is all that is needed.
What is quality end-of-life care? That can be a hard question because it depends on where a person lives, what the society expects, what the society can deliver and religious beliefs. The Eskimo idea of putting grandma on an iceberg and sending her out with the tide is one view. This primitive Eskimo practice is not without feeling or philosophy and focuses on the basics. The family loves grandma, the family is in jeopardy trying to provide care and food, and death should be painless and peaceful.
A modern society would add respect for a person’s wishes — such as religious views, desire for medical care, burial and distribution of assets. But, despite the willingness of modern society to follow a person’s end-of-life requests a huge majority do not make end-of-life wishes known leaving family and doctors to just guess. And, the result is expensive medical care and tremendous anxiety for the family — was that really a cultural advancement?
To try to make it easy for patients to make end-of-life medical care requests doctors have encouraged patients to provide them with “advance directives” — some statement in advance of death about what type and quantity of care is wanted at the end of life. For many years the “living will” has been the vehicle for those requests. As people fill out their will regarding property they often will fill out a “living will” with statements about what care they want or don’t want.
The “living will” has had problems because it was often filled out in a lawyer’s office without regard to the actual health of the patient or any understanding of advancing science or the grey area of incurable disease.
In the past 10 years a more rational approach has been growing in the form of “Medical Orders for Scope of Care”. Which likewise is a legal document but one which is a true medical order issued by a licensed physician and discussed with the patient to match their wishes. Click on the links to see examples: IPOST, MOST and POLST.
Laura Landro of the Wall Street Journal wrote her story “Patients’ End-of-Life Wishes Granted, Study Finds” on 6/9/14 about an article in the Journal of the American Geriatrics Society:Fromme, E. K., Zive, D., Schmidt, T. A., Cook, J. N. B. and Tolle, S. W. (2014), Association Between Physician Orders for Life-Sustaining Treatment for Scope of Treatment and In-Hospital Death in Oregon. Journal of the American Geriatrics Society. doi: 10.1111/jgs.12889
The essence of the article is that the health care system in Oregon does actually follow the POLST form requests.
There are several legal documents essential for someone approaching end-of-life:
- A will or trust. Make bank accounts “payable on death” to some person. Make sure securities are designated “transfer on death” to some person.
- A living will or MOST form (the latter is probably better)
- A power of attorney for health care form
- A power of attorney for property form
- A HIPPA form to designate who may have access to medical information.
- Identification documents: birth certificate, marriage certificate, social security card, state issued ID card (like a drivers license), health insurance card, and military discharge papers — give copies to your power of attorney.
- Make sure the executor of your estate or trustee knows where to find a will, trust documents, bank information, life insurance policies, pension information, funeral arrangements, deeds, and securities.