End of Life Choices

For many with heart disease it is a battle to remain living, yet know you are dying from a diseased heart. Many don’t discuss with their healthcare practitioners the choices and decisions they have when it comes to fighting to stay alive or choosing to let go. Over my career I have watched many patients suffer trying numerous medical interventions and medications only to have a horrible quality of life. In the medical community we see patients literally beg their doctors to let them pass, and yet the physician urges them to fight on with the newest surgery or medication. These are issues that heart patients should be able to discuss with their families and health care providers early on, so everyone has a clear picture of your wishes.

When it comes to end of life you have choices

Your choices

  • Stop treatment that prolongs your life. Instead, receive only treatment that focuses on your comfort and quality of life.
  • Don’t stop treatment that prolongs your life.

Key points in making your decision

  • If there is a good chance that your illness can be cured or managed, your doctor may advise you to first try available treatments. If these don’t work, then you might think about stopping treatment.
  • If you stop treatment, you may still receive care that focuses on pain relief, comfort, and the quality of your life. This is called palliative care  or hospice care.
  • A decision to stop treatment that keeps you alive doesn’t have to be permanent. You can always change your mind if your health starts to improve.
  • Even though treatment focuses on helping you live longer, it may cause side effects that can greatly affect your quality of life and your ability to spend time with your family and friends.
  • If you still have personal goals that you want to pursue, you may want treatment that keeps you alive long enough to achieve them.

Reasons to have life support:

  •  You need life support because of an emergency that is not related to your illness.
  •  Life support may help you return to your  normal activities.
  •  Your quality of life is good and you have a sudden event that requires life support..
  •  You could recover well from the event.

Reasons  not to have life support

  • You have other long-term health problems that make it less likely that you will benefit from life support.
  • The risks of life support outweigh the benefits.
  • Life support will not help you return to your normal activities or to a level of activity you would like to have.
  • You want a calm, peaceful death, and you do not want to spend the rest of your life on a ventilator

Physician Orders for Life Sustaining Treatment

I had a patient who wanted to die in cardiac rehabilitation. He expressed this wish often. He was adamant he did not want any life-sustaining treatment, however in rehab we were bound to comply with our standard of care which meant life-sustaining treatment, CPR and defibrillation until the patient was received in the hospital emergency room where his advanced directive were on file. This is the case in most hospital or outpatient settings, even EMS has an obligation to respond unless one has a POLST form visible in their house or on their person.   The only legal way for me to respect his wishes was for him to have a POLST form filled out and on file in the rehab department, and as a card he carried and a form posted in his home. What is POLST. It is an agreement made between  you and your physician about what life-sustaining treatment you with to have. To read more about this visit the link: http://www.ohsu.edu/polst/

Do you have an ICD?

Heart patients who have an ICD need to consider and  discuss the difficult issue of ICD deactivation as  clinical status worsens and death is near. Unfortunately, “clinicians and patients rarely engage in discussions about deactivating ICDs, and most devices remain active until death” and “most patients are not even aware that deactivation of the shocking function is an option.

Palliative care relieves the symptoms of  disease, such as pain, shortness of breath, fatigue, constipation, nausea, loss of appetite and difficulty sleeping. It helps you gain the strength to carry on with daily life. It improves your ability to tolerate medical treatments. And it helps you have more control over your care by better understanding your choices for treatment options. Including decision-making and coordinating of issues such as ICD deactivation.

The point of palliative care is to relieve suffering and provide the best possible quality of life for both you and your family.

Palliative and hospice care is often left for the very end of life. By initiating palliative care earlier it reduces emergency department visits and improve symptoms, which increases time at home and quality of life.

Palliative Care
Palliative care teams are made up of doctors, nurses, and other professional medical caregivers, often at the facility where a patient will first receive treatment. These individuals will administer or oversee most of the ongoing comfort-care patients receive. While palliative care can be administered in the home, it is most common to receive palliative care in an institution such as a hospital, extended care facility, or nursing home that is associated with a palliative care team. There are no time restrictions. Palliative care can be received by patients at any time, at any stage of illness whether it be terminal or not.

Hospice

Hospice programs far outnumber palliative care programs. Generally, once enrolled through a referral from the primary care physician, a patient’s hospice care program, which is overseen by a team of hospice professionals, is administered in the home. Hospice often relies upon the family caregiver, as well as a visiting hospice nurse. While hospice can provide round-the-clock care in a nursing home, a specially equipped hospice facility, or, on occasion, in a hospital, this is not the norm. You must generally be considered to be terminal or within six months of death to be eligible for most hospice programs or to receive hospice benefits from your insurance.

Our health care system faces the challenge of allocating limiting resources to an aging population. The focus is on solutions that improve patient quality of life while minimizing unnecessary expenses.  Integrating palliative care into the health care system at an earlier time helps quality of life and reduced cost associated with the disease process.

http://www.getpalliativecare.org/whatis/faq

http://www.caregiverslibrary.org/caregivers-resources/grp-end-of-life-issues/hsgrp-hospice/hospice-vs-palliative-care-article.aspx

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Nitroglycerine for Heart Symptoms

Nitroglycerine  Facts

One thing that always surprised me in cardiac rehabilitation was the understanding of using Nitroglycerin (nitro).  I think over the years I saw and heard every way imaginable to ensure nitro tablet wouldn’t work if needed. Or the other one is when patients would carry it for years and then not use it when it is most appropriate to use. The take home message is if you are having discomfort that you suspect is heart related use a nitro ASAP.

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How Nitro works:

Nitroglycerin  dilates blood vessels that supply the areas of the heart where there is not enough oxygen thereby delivering oxygen to the heart tissue that needs it most.  The dilation of  veins and arteries  reduces the amount of blood returning to the heart so that the heart does less work and requires less blood and oxygen. Dilation of the arteries  lowers the pressure in the arteries against which the heart must pump. As a consequence, the heart works less and requires less blood and oxygen.

How to store Nitro:

Here is the thing Nitro is a very volatile compound. It breaks down rapidly with light, heat, oxygen, time and exposure to plastic. It is packed in a glass vial because plastic will leach the active ingredient out of it and all you have left is the inert ingredients that hold the tablet together. Therefore don’t transfer it to a container that is plastic, don’t put a couple in a baggy and put them in your wallet. Yes it is a pain in the butt to carry the bottle everyday, but find a way, or use a metal nitro vial which you can wear around your neck.

Heat will break down the nitro tablets. If you carry your Nitro in your pants pocket every day the heat from your body will gradually make the nitro less potent.  What I teach patients is to take a good marker and write on the bottle the date three months from when they started to carry the bottle. That is when it should be considered to replace. Sometimes it can go six months, but if you look at the bottle…hold it up to the light, don’t open it…and the tablets are looking powdery or crumbled….then replace the bottle. If you leave them in your pocket and they go through the dryer…time to replace. If you leave them in your car and your car is 100* or more…replace the bottle. That was a common one…”I leave them in the glove box in my car.”  NO NO NO!

If you have opened the bottle you have exposed the tablets to oxygen. Oxygen breaks down the nitro. Once the bottle has been opened, label the bottle for six months from the time  you opened it. Replace the bottle at six months. A story I would frequently hear that would make me cringe would be when a patients loved one or child would say ” I poured a couple in a paper cup and have them in my cupboard in case they need one while at my house”…UHG!!!! Won’t work sorry!

The bottle is brown to prevent sunlight from destroying the tablets as well. Don’t transfer them to any other bottle, there is a reason they come this way.

When to use Nitro:

The most common mistake in using nitro is when patients would tell me the pain wasn’t bad enough to use it.  The instructions for nitro don’t say wait until the discomfort is 9 out of 10, the instructions are to use the nitro if you have heart symptoms that do not go away with rest.  This means any heart discomfort, no matter how minor if is present for 5 minutes, would indicate using the nitro.  If you wait until you are really in pain, you probably will have damage done to the heart. The point of this drug is to prevent the damage to the heart by improving the blood flow preventing damage from occurring.

  • Sit down
  • Place one tablet under the tongue – most people experience a burning or tingling feeling under the tongue, a headache, a flushed feeling….If you experience this you should always experience this, as this indicates your nitro is fresh.
  • Wait 5 minutes – if the symptoms resolved rest a bit then gradually become active again
  • If the symptoms persist use a second nitro table, again wait 5 minutes, if needed take a third 5 minutes later
  • If you took a third nitro and still have symptoms call 9-1-1.Try to do some deep relaxing breathing, and thinking try not to panic. It’s a good time to use those relaxations skills.
  • Chew an adult strength aspirin while you wait for paramedics

One discussion I frequently have with patients goes as follows: You may carry your nitro faithfully for years and never need it, but if and when you do need it, you want it to be fresh so it can work. On the other hand some will need to use occasional nitro. This isn’t a bad thing. Your physician prescribed it for a reason. Use it!!!! There are common times when people need one…Exposure to cold air, Exertion that is strenuous, Emotional Stress, and after Eating a large heavy meal. Where the medical community get concerned is if you are requiring 2-3 nitro to clear your symptoms, if you are having more frequent symptoms, or if your symptoms are coming on at rest or waking your from your sleep. The escalation in symptoms should be reported to your physician ASAP.

Keep a log of your nitro  use.  Put on your log, the date, what you were doing when the symptoms occurred, and how many nitro it took to clear the symptoms. When you have a followup appointment with either your cardiologist or your primary care physician present them with the log. Sometimes we are able to find a pattern, do your symptoms come on at a certain time of day? Thus we can probably adjust medication timing to prevent this. Do they come on with a certain level of exertion? We call this your angina threshold and we watch to see is the threshold improving or worsening. Often through exercise we can improve the angina threshold.

What about long acting nitro?

There are long acting nitroglycerin medications that slowly release nitro into your system throughout the day. These are usually taken during the hours you are up and active. Rarely are they used twice a day, as your body needs a period of time in which it is free of nitro, or else it gets to where the nitro doesn’t work as effectively. It is still ok to use the fast acting nitro if you are on this medication.

What about the headache from taking Nitro? 

Take a Tylenol.  The headache won’t kill you but the heart attack might.

Prevention measures to avoid blood clots

Common issues following hospitalization include blood clots. Patients often wonder why we force them to get out of bed and move. Prevention of blood clots in the legs and lungs is critical for recovery

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Nitroglycerine – what you should know

One thing that always surprised me in cardiac rehabilitation was the understanding of using Nitroglycerin (nitro). I think over the years I saw and heard every way imaginable to ensure nitro tablet wouldn’t work if needed. Or the other one is when patients would carry it for years and then not use it when it is most appropriate to use.

.

How it works:

Nitroglycerin  dilates blood vessels that supply the areas of the heart where there is not enough oxygen thereby delivering oxygen to the heart tissue that needs it most.  The dilation of  veins and arteries  reduces the amount of blood returning to the heart so that the heart does less work and requires less blood and oxygen. Dilation of the arteries  lowers the pressure in the arteries against which the heart must pump. As a consequence, the heart works less and requires less blood and oxygen.

How to store Nitro:

Here is the thing Nitro is a very volatile compound. It breaks down rapidly with light, heat, oxygen, time and exposure to plastic. It is packed in a glass vial because plastic will leach the active ingredient out of it and all you have left is the inert ingredients that hold the tablet together. Therefore don’t transfer it to a container that is plastic, don’t put a couple in a baggy and put them in your wallet. Yes it is a pain in the butt to carry the bottle everyday, but find a way, or use a metal nitro vial which you can wear around your neck.

Heat will break down the nitro tablets. If you carry your Nitro in your pants pocket every day the heat from your body will gradually make the nitro less potent.  What I teach patients is to take a good marker and write on the bottle the date three months from when they started to carry the bottle. That is when it should be considered to replace. Sometimes it can go six months, but if you look at the bottle…hold it up to the light, don’t open it…and the tablets are looking powdery or crumbled….then replace the bottle. If you leave them in your pocket and they go through the dryer…time to replace. If you leave them in your car and your car is 100* or more…replace the bottle. That was a common one…”I leave them in the glove box in my car.”  NO NO NO!

If you have opened the bottle you have exposed the tablets to oxygen. Oxygen breaks down the nitro. Once the bottle has been opened, label the bottle for six months from the time  you opened it. Replace the bottle at six months. A story I would frequently hear that would make me cringe would be when a patients loved one or child would say ” I poured a couple in a paper cup and have them in my cupboard in case they need one while at my house”…UHG!!!! Won’t work sorry!

The bottle is brown to prevent sunlight from destroying the tablets as well. Don’t transfer them to any other bottle, there is a reason they come this way.

When to use:

The most common mistake in using nitro is when patients would tell me the pain wasn’t bad enough to use it.  The instructions for nitro don’t say wait until the discomfort is 9 out of 10, the instructions are to use the nitro if you have heart symptoms that do not go away with rest.  This means any heart discomfort, no matter how minor if is present for 5 minutes, would indicate using the nitro.  If you wait until you are really in pain, you probably will have damage done to the heart. The point of this drug is to prevent the damage to the heart by improving the blood flow preventing damage from occurring.

  • Sit down
  • Place one tablet under the tongue – most people experience a burning or tingling feeling under the tongue, a headache, a flushed feeling….If you experience this you should always experience this, as this indicates your nitro is fresh.
  • Wait 5 minutes – if the symptoms resolved rest a bit then gradually become active again
  • If the symptoms persist use a second nitro table, again wait 5 minutes, if needed take a third 5 minutes later
  • If you took a third nitro and still have symptoms call 9-1-1.Try to do some deep relaxing breathing, and thinking try not to panic. It’s a good time to use those relaxations skills.
  • Chew an adult strength aspirin while you wait for paramedics

One discussion I frequently have with patients goes as follows: You may carry your nitro faithfully for years and never need it, but if and when you do need it, you want it to be fresh so it can work. On the other hand some will need to use occasional nitro. This isn’t a bad thing. Your physician prescribed it for a reason. Use it!!!! There are common times when people need one…Exposure to cold air, Exertion that is strenuous, Emotional Stress, and after Eating a large heavy meal. Where the medical community get concerned is if you are requiring 2-3 nitro to clear your symptoms, if you are having more frequent symptoms, or if your symptoms are coming on at rest or waking your from your sleep. The escalation in symptoms should be reported to your physician ASAP.

Keep a log of your nitro  use.  Put on your log, the date, what you were doing when the symptoms occurred, and how many nitro it took to clear the symptoms. When you have a followup appointment with either your cardiologist or your primary care physician present them with the log. Sometimes we are able to find a pattern, do your symptoms come on at a certain time of day? Thus we can probably adjust medication timing to prevent this. Do they come on with a certain level of exertion? We call this your angina threshold and we watch to see is the threshold improving or worsening. Often through exercise we can improve the angina threshold.

What about long acting nitro?

There are long acting nitroglycerin medications that slowly release nitro into your system throughout the day. These are usually taken during the hours you are up and active. Rarely are they used twice a day, as your body needs a period of time in which it is free of nitro, or else it gets to where the nitro doesn’t work as effectively. It is still ok to use the fast acting nitro if you are on this medication.

What about the headache?

Take a Tylenol.  The headache won’t kill you but the heart attack might.