“Dying to Know: What Patients/Families Want to Know about End of Life Care”

Last week, the Stanford Health Library hosted a lecture on end-of-life care, titled “Dying to Know: What Patients and Families Want to Know about End of Life Care and Issues.”  The speaker was Stanford oncologist Dr. Kavitha Ramchandran, who spoke for about 45-minutes and answered questions for another half hour.

[Update:  The recording is now available on this webpage of the 2017 video library:]


Brain Support Network volunteer Denise Dagan joined the lecture via live webcast.   Here’s her report on the highlights of the lecture:

Coincidentally, Dr. Ramchandran covered some of the same information as a couple articles Robin sent recently — the difference between hospice and palliative care, and how to communicate effectively with your doctor about treatment/procedure options.  So, I’ll only highlight a few things here, but it is well worth viewing the whole webinar, as she does speak a bit about the dying process as well, and the audience had a number of interesting questions.

For end of life care conversations, tell your doctor your personal goals for the quality of life or level of recovery you hope to have after a treatment or procedure, and ask which option will best achieve those goals.

Your family may expect you to pursue every curative therapy, while you are exhausted and just want to be able to, “eat ice cream and watch football.”  Even if the family is surprised to hear this, if that’s where you are in your journey, you need to tell your doctor.  It will change the course of the whole conversation with the doctor, and your family.

Interestingly, Dr. Ramchandran views hospice as very flexible.  She recommends it for patients needing good in-home symptom management for a month or so, when she wants them to be in really good shape for the next round of chemo.  If they are, and are willing to try the new chemo, she has them discharged from hospice and begins curative treatment again.  If they aren’t in such good shape, or choose not to continue chemo, they stay in hospice, but they are usually happy about the level of care they are receiving because it is all about making the patient as comfortable as possible.

Hospice will discharge you if your condition improves.  My Dad had Lewy Body Dementia and was in hospice twice for about two years each time.  It was a Godsend.  In between he was in a transitions program that followed his progress and ensured he was readmitted to hospice when his health declined.  Not all hospice programs are created the same.  I recommend a non-profit program.  Get recommendations from your doctor, support group members, friends and family, and interview a couple before you enroll.

Dr. Ramchandran spoke some about the dying process.  Her analogy is to think of the birthing process and a new mother’s idealized expectations about who will be there, how the family will document the event, having a doula, etc.  In reality, neither birth nor dying ever happen in quite the way you want, so you may need The Serenity Prayer:  God, grant me the serenity to accept the things I cannot change, courage to change the things I can, and wisdom to know the difference.

Denise’s full notes are below.



Denise’s Notes from

“Dying to Know: What Patients and Families Want to Know about End of Life Care and Issues”
Stanford Health Library
March 2, 2017
Speaker:  Kavitha Ramchandran, MD, oncologist, Stanford

Disclosure is the action of making new or secret information known.  Families feel they can’t get a straight answer to, “How much time do I have?” even though doctors know information reduces anxiety. Most people do want to know what to expect about their treatment, prognosis, and especially pain. When they know, they make better decisions about how to spend that time and choices about their care.

Why don’t doctors talk about end of life?
Because it makes them uncomfortable to talk about not being able to help anymore.  It means you will die, and that’s sad, even for them.  Doctors don’t always know the prognosis.  Especially with new treatments, doctors don’t know how well it will work.

Now that you know, what comes to mind?
– What is dying process like?
– How much of a loss of control will I have over my body, my decisions, my quality of life, my pain, etc.?
– How will my treatments and death affect those I love?
– How will others react to me if I lose my hair, are unable to speak, or when I am the one who’s dying, etc.?
– Will I be isolated during treatment, hospice, or death?
– What is the meaning of my life, now that I can see the end?

Do I have a say in where I die, in having every treatment available, in treating my pain effectively, etc.?  People like to be in control.

Goals of Care / Informed consent – means does your health care meet your personal goals?
– Good health care should ensure education and understanding – ask, tell, ask should be the process for the conversation.  One problem with the way conversations usually go, is that the doctor is speaking medical-ese, and the patient does not understand.  When the patient doesn’t understand, they don’t know what questions to ask, so they are still in the dark after they talk with their doctor.  The doctor should:
– ASK what you understand about your condition,
– then have you TELL them what you understand,
– finally ASK what questions you still have.

– Another way to make sure both the doctor and patient is on the same page is to ask the patient what their expectations are/what they still want to be able to do, following a recommended treatment or procedure.

– Ask your doctor for a concrete recommendation, rather than them giving you percentages and statistics about several options.  Hold their feet to the fire for an answer of which they actually recommend.  For them to evaluate the options with your goals in mind, you need to tell them what’s important for you to be able to do after a procedure or treatment.  Without that information they are guessing at which option is best for you.

Advance Directive for Healthcare is a legal document to designate your medical decision maker, and to document code status.  It should be coupled with the POLST form for those who choose DNR, because it won’t be available with your decision maker at the place of emergency where EMTs are working.  POLST is for EMTs.  Keep it on you or display it prominently in your home.

End of Life Options Act / Death with Dignity Act is now in 5 states.  For your application to qualify, you must:
* have less than 6 months prognosis
* be able to administer the life-ending medication on your own
* have the approval of two physicians
* be over 18-years-old
* be of sound mind

Hospice provides care for patients who are seriously ill.  If they say I do not want to be in pain and will take sedation not to be in pain, it is hospice’s highest priority to do that, even if the patient’s life is somewhat shortened in the process.  It is called palliative sedation.

Palliative care has been equated with end of life/hospice care, but it should not be.  It is caring for anyone with serious illness following or during active treatment.

Palliative care early on improves quality of life, and improves survival.  Probably because, if you’re focused on the next curative treatment you may not tell the doctor that you’re not sleeping, or other peripheral symptoms.  Treating these bothersome peripheral symptoms helps you be strong enough for the curative therapy (chemo, surgery, bone marrow transplant, etc.)

Hospice is one arm of palliative care.  To qualify you must:
* have a prognosis of 6 months or less
* refuse curative treatment (although all other chronic or acute illness is treated)
* agree that pain & symptom management (of all your ailments) is the goal
* understand it doesn’t change your insurance
* understand it is not a place, but those who come to you wherever you are (home, skilled nursing, palliative unit at the hospital)

Good healthcare walks with you from curative & palliative care, followed by hospice care, then death and family bereavement care.

The Dying Process:
Think of the birthing process and all a new mother’s expectation of who will be there, filming the event, a doula, etc.  Neither birth, nor dying ever happen in quite the way you want, so you may need the Serenity Prayer:  God, grant me the serenity to accept the things I cannot change, courage to change the things I can, and wisdom to know the difference.

Give me the details…  What will I experience?  Is it be scary?  How will it effect my kids, my husband? Sometimes the patient doesn’t want to know, but the spouse does. Doctors only know so much, but they can answer some questions.

People are most afraid of pain.  It can usually be controlled, 80% of the time.

There may also be secretions, restlessness, confusion.  It can be upsetting for family members.  Its very sad to see the person they knew slipping away.

What is the body doing?
– Shutting down:  skin feels cool, clammy; decreased urination, no appetite, no need for fluids; being in bed is normal; sleeping a lot is normal

Question & Answer:

Can EMS check for troponin levels to tell if it’s a heart attack?
Hospital, because it takes time and a lab.

Death with dignity act and whether starving yourself is a peaceful way to die if you can’t get the prescription?
Each person has their own view of what is suffering, so they can stop eating.  That can take weeks, especially if they’ve just been in the hospital with loads of fluids from IVs.  Those who use the death with dignity act don’t want the dying process.  They want control over the timing of their own death.  If they ask for the prescription because they are afraid of pain the doctor should address how well pain can be managed in their situation.

Is palliative care a new specialty?  Why is palliative care sometimes offered in the hospital and sometimes not?
Palliative care is the new ‘old’ medicine is, “Care always, cure sometimes.”  A palliative care clinic is a new thing.

What is the name of the most popular aid in dying medication today, who makes it, and how do you order it?
California is trying a few different versions because some are too expensive for insurances to be willing to cover it.  Only a few pharmacies are filling it, right now.

Is there a book on how to counsel families through an advance directive?
The conversation project website walks you through preparing an advance directive.  The letter project has patients and families write a letter to their doctor about their wishes.
Hard choices for loving families is a good book.

It’s a burden to loved ones if you have a serious illness and are being cared for at home.  The circumstances can be undignified.
Alternative is skilled nursing, but asking the patient if they mind being in the middle of the living room in a hospital bed, etc. will help get everyone on the same page.  Sometimes patients continue to try curative therapies because they feel the family expects them to.  Having a frank conversation about what the patient wants is important.

If 80% of pain can be managed in the dying process, what about the 20%?
Admission to a clinic for pain specifically, an epidural, if those fail they use sedation which hastens death somewhat.

Does palliative sedation need to be in an advance directive?
No but the conversation about sedation should happen with family so they know your wishes as your decision maker.  That helps the doctor, too, because they don’t want to assume one way or the other.

So many people are living into their 90’s and they keep coming into the ER, so how do you handle that?
It would be nice to re-examine home-based care.  That is why some doctors recommend hospice, because it brings care to your home.  When the same person has been into the ER a few times, it usually means things are not going well at home, so setting up hospice for them can really help them feel better and stay out of the ER with that added expense and hassle.  The POLST form has multiple components but it is basically a home-based DNR.  It must be signed by a doctor or nurse practitioner.

Are all physicians bound by the end of life options act?
No.  It is hard to find a doctor that will do it.  Most clinics have designated one physician to handle all requests because most don’t want to deal with it.  The Ethics Team can start the process for you at Stanford.

Who qualifies for palliative care?
People with significant symptom management need, especially with a psycho-social need with their family. A palliative care team includes doctors, nurses, social workers, clergy, psychologists

Have people stopped eating and drinking to hasten the end of their life, or an overdose of morphine?
Yes, she has known people who have stopped nourishment, but most patients at Stanford are looking for cures.  Oncology doctors have been overdosing morphine for decades before the End of Life Options Act was passed.  She believes in having the conversations with families early and often to meet the family’s specific goals.

When people change settings you lose a team you trust and have to adjust to a new healthcare team.
Yes.  Sometimes nobody is leading the team.  The speaker asks patients who their point of trust in the new place.  Sometimes it’s a nurse practitioner, but someone who keeps track of their care and can communicate with the facility.

Can you request palliative care in the hospital or at home before hospice.
Yes.  Hospice agencies may do the palliative care at home (bridge programs) but they may not be able to do as much as you want them to do under that type of program.

If you develop a urinary tract infection under hospice, will they treat it and take you go back to the hospital?
Yes, they would treat it because that would make the patient feel better.  They would probably not take you back to the hospital unless treatment at home isn’t working.  Hospice will not treat the underlying diagnosis for the hospice care (cancer, heart failure, etc.) Hospice is not a one-way street.  If you improve you will be discharged from hospice.  If/when you decline again, you will be readmitted. Average time in hospice is 3-4 days because people are reluctant to admit they are nearing death.  It should, instead, be the best home-based symptom management.

Friend alone with stage four cancer who knows nothing about palliative care.  How to tell him?
He should ask his primary care physician for a palliative care referral.  The speaker’s clinic prefers to begin care early on in cancer treatment so they know them throughout the course of their disease treatment.  Familiarity improves palliative care.