IamA board certified hospice and palliative medicine physcian, AMA!

That seems like a very emotionally draining and hard line of work, what made you choose that career?

That's a very long story, but to sort of TL/DR it, I started out as a firefighter/paramedic, and when I decided to go back to school I chose nursing since it seemed to fit in with the firefighting/EMS work. I was first exposed to hospice medicine as a nurse, and always felt like it was something that would allow me to get to know my patients better then just an office practice based physician, which was one of my goals. I initially did it on a part-time basis, however after a few years decided to do hospice medicine full-time because it seemed to fit.

For what little an Internet strangers opinion matters, I admire what you do. Not everyone could take that burden.

Thank you, and I agree. It's not for everyone.

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There are lots of doctors who were nurses before they went to med school. This person is a physician.

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I started as a firefighter/medic, and then went to nursing school while I was working with the fire department and then took early retirement (at 10 years) when I got into med school.

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I think I have another 10 years to go. It started out at just under $200,000. It’s like a car payment every month. A nice car.

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My interest rate is very low, and I can afford to make the payment. My eyes were open when I decided to quit the fire department and go to medical school (although the guys that I went to rookie school with are retiring this year with a full pension!), And I'm grateful that I was able to basically go to med school on credit so it's really okay about that car payment.

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Hospice RN here. My experience with patients new to the program, especially oncology patients, is that they often get the "terminal news" very, very late in the game. They've been through 3 kinds of chemo, radiation, and a trial drug, and each time something new is prescribed, they have a renewal of hope. Then when the onco reaches the point of absolutely zero treatment options, hospice is offered as kind of afterthought. I've been to hospitals to see referred patients, read the progress notes prior to seeing the pt./family, and understand very clearly that there's no other options for the patient. But when I walk in and introduce myself as the hospice nurse, it's shock and dismay - "The doctor said I just have to get stronger and get my cell counts up, then I can start chemo again" or some variation.

On the other hand, sometimes patients have received the news early and have been in denial and unable to accept their doctor's recommendation to stop treatment. Those are patients who I see calling 911 more often than any others - they accept hospice as comfort care/quality of life management, but when they start to decline or face an anxiety-producing situation, they panic and revert to acute care. We explain to patients clearly - it's part of our consent forms - that they have to get the OK from hospice to seek acute care related to their terminal illness or else Medicare/insurance won't pay - but again, panic mode. Also, during the consent signing process (when all this is explained), patients and families are spinning in crisis mode. Studies show they only retain about 25% of what's discussed at admission.

Finally, one of the benefits of the hospice model is that each patient has a team - MD/DO, APRN, RN, SW, chaplain, nurse aide, volunteer - and each of those team members work with patients/families to help them work through the issues related to death and dying. Unfortunately, in my 10 years as a hospice RN, I've had cases in which that acceptance was never reached, and the pt. died in an ER because the family panicked and called 911. And as OP stated, the length of stay for some patients is just too short to establish a therapeutic relationship...again, especially those oncology patients, who are often at death's door before their doc (or an unfortunate hospitalist) refers them.

Excellent answer!

There are a number of interesting questions here, and I’ll do my best to sort them out and answer them. First, there are definitely a lot of doctors that are uncomfortable with telling a patient that it looks like they are going to die soon. I’ve had that conversation with many patients who were enrolled in hospice, yet no one ever sat down and just talked with them about it. Maybe one Doc thought it was another’s place to do so, but lets face it, it’s a difficult conversation that no wants to have. I am very open and up front, and I don’t use a lot of euphemisms. My experience has been that if someone wants to have the conversation, they’ll ask the question (and I give them many opportunities and lead them up to it, but allow them to ask first), otherwise they’re usually aware but prefer not to talk about it as a defense mechanism. Of course, there is the supposition that if a patient is on hospice they know that they are terminally ill, but there are a few cases where this is not true. I don’t withhold information, but you can usually tell when someone is uncomfortable about talking about it and there doesn’t seem to be any benefit to rubbing their nose in it.

As far as ‘acute medical care’, we do this all the time. The issue seems to be more of an economical/accounting one in my opinion. Medicare says that if someone is dying from one disease process they will still cover all of the other disease processes. So if John has lung cancer and falls and breaks his leg, medicare will cover the orthopedic charges. It seems that it gets hazy when it comes to certain charges (pain meds, respiratory therapy, etc.) so many hospitals and hospices prefer to just discharge the patient from hospice and then re-enroll them after the acute issue is resolved. This is also to help protect the family from an unexpected bill and I think this happens fairly frequently. Ultimately this seems to be an administrative call.

In my opinion oncologists are pretty optimistic people (God bless them!) and when I get a referral from an oncologist they are always right, there are no more curative options. I have a personal story that has made me rethink about 4th or 5th treatment regimens so that has changed my perspective somewhat (my SO is a leukemia survivor who was told at one point that she had 2 weeks to live) but I have also seen patients whose quality of life has been very negatively affected by chemo and radiation. I believe that we need to give the the patient the resources to make an informed decision and then let them make the call. Many of my patients have been given treatment options but have finally said, “enough.”

Danish medical student here (almost done). In Denmark we aren't allowed to write something in their journal (such as, this treatment is a long shot and the last hope) and not tell them. If they complain about being badly informed it could end up with you losing your license.

That’s very interesting. I think there is a lot of selective hearing during times of great stress, so there is potential there for problems. Good luck with your career!

Why is it when one is sick and hospice just starts to come to see the patient, one of the first things they do is prescribe morphine ?

Hospice nurse. It depends on the situation, but morphine not only helps with pain, it also helps with respiratory distress. It helps w/ patients not feeling like they are starved for oxygen. Also, morphine is readily available in liquid form that can be absorbed under the tongue so that you don't have to use an IV and can be given at home w/out a med pump.

I couldn’t have said it better. Not everyone goes on morphine (or some other pain medicine narcotic) right away and a high percentage of my patients come to me already on pain medicine. In my experience, Probably less than half of my patients are on any kind of pain medicine, But if someone is actively dying morphine is a very good drug for the reasons that lastredditname pointed out. Unfortunately there is a misconception that hospice is only for people who are actively dying or wish to be helped along the road quicker and for that reason I think about a third of the patients that are admitted to a hospice program in the US die within 24 hours (I think- please don’t hold me to that).

Edit: I'd also like to add that there is a misconception that morphine is an extremely powerful drug. When we look at all of the narcotics that are available and rank them from weakest to strongest, according to most equianalgesic charts morphine and hydrocodone (vicodin) are the two weakest. Oxycodone, the narcotic in Percocet is 50% stronger. In other words, if I have 10 mg of oxycodone and want to give an equivalent amount of morphine I need to give 15 mg of morphine to achieve the same pain relief. Dilaudid (hydromorphone) is stronger then oxycodone, and Fentanyl is stronger still. For some reason it seems that morphine has a reputation of being something that we use to help someone die, and nothing could be further from the truth. To be honest I might have been under that same impression back in the day.

Probably because it's not commonly prescribed unless you're bedridden or in hospital, people tend to assume it's an extremely potent opiate.

You’re probably right. I think morphine is portrayed as a very powerful drug in the media as well.

How the F* did humans evolve to have a receptor to a chemical, produced by a little flower from a distinct area, that is such a great pain relief?

Toxicologist atheist etc etc

I don’t think we did. I think we naturally produce chemicals (endorphins, etc.) that have pain receptors sites that these chemicals just happen to also fit.

Yes. But, why always morphine even in the stages of an incurable disease where the patient isn't quite painfully suffering yet ? Couldn't a lighter medication be given ?

Exactly. It IS the weakest opiate.

I just wanted to thank you for the work you do. My mother-in-law passed away quite suddenly and unexpectedly a week ago and one of the ICU nurses also did palliative care. He did his best to comfort us and make her passing a peaceful experience. Do you have any words for families that had to make the decision to withdraw medical care?

What I tell families is this: if your loved one had a crystal ball 25 years ago in could see themselves in their current situation, What will he tell you to do? Would they say, "it's not so bad, please do everything” or would they say, "this is not what I consider to be a quality of life that I want to extend.” Whatever the answer is is what the family should do.

That is how we made the decision to withdraw care but it helps a lot to hear it from someone in the medical/death business. Thanks.

I’m sorry. I hope I never have to make that decision. I think it kind of lets the patient make the decision for the family.

What do you think of physician-assisted suicide?

Personally, I don't think it is my place (or anyone else's place for that matter) to say to someone, "I know you have a debilitating disease that makes your life miserable, but I am not comfortable with you committing suicide you’ll just have to suffer.” I think the 29-year-old woman with the glioblastoma out in Oregon has every right to make the decision that she's making. I think it's a compassionate act to help someone in that position. So I guess I'm for it, although to be honest I would have a really really hard time doing it.

THIS! As an CNA in palliative care one of the hardest things for me to do is find an answer to the question, "why won't they just let me die?".

As someone who has also worked as a palliative care CNA, THIS! One of the reasons I eventually ended up leaving this field. I loved getting to know my patients in this way, but in the end I couldn't see them/feel them suffer....

Its hard, and this is going to sound weird, but their suffering is why I stay. Dying is the last thing we do, and if there is anything I can do to make them more comfortable whether that be positioning them in bed "just right" or getting their loved ones to laugh around them I know that I've given them something that I can ever expect to get back from them. It hurts a lot, and I've trained myself to have a certain level of detachment because I still have to do the same for the next one.

I think that we are going to do our jobs the right way, we need to make a connection of some sort. Its when we make a strong connection that we become vulnerable, but I don’t there’s really any other way to do it, so there’s always going to be that risk. For me, it’s worth it.

Premed (non-traditional) here and I know there is a lot of push-back from a lot of docs from many specialties on this topic. From what I understand, the AMA has pulled back from the whole debate. I live in Washington state and voted yes on the death with dignity act a few years ago (which passed!). Why are so many docs (from your experience) so adamently against this? If a patient is going to die unless we do procedure x, they have the right to refuse treatment - I don't see any difference between that and choosing to take a fatal treatment (obe is passive, one is active). What are your thoughts on why some docs refuse to participate in this method of treatment and (the shitty question) does it have to do with stats?

The problem as I see it is that this is a really slippery slope with a lot of potential for abuse and a TON of gray area. Unless we are sure that the patient truly understands their situation and is able to make an informed decision like our friend in Oregon has, it I can be extremely difficult to decide whether or not someone is appropriate to make these decisions. I honestly don’t think it has anything to do with stats.

I guess people could opt in while healthy kind of like being an organ donor?

SW student here: a professor with decades of experience in end-of-life counseling and grief counseling said a lot of people say they would kill themselves if they were diagnosed with terminal illness/Alzheimers disease. Almost nobody ever does. In most cases the desire to live is very strong.

In studies that I've seen, the most common reason for people choosing physician assisted suicide is not fear of pain or debility but rather loss of control.

How do you feel about the thought that there should be a separation between the people who try to heal and those who speed up the process of dying? (I heard that argument at a panel discussion once)

I don’t know anyone who ‘speeds up' the dying process. We don’t seek to shorten or prolong life, our focus is on enhancing the quality of whatever time the patient has. Studies show that patients who have good pain control live a little longer.

As a second year medical student I am curious - What are the pros and cons of your chosen field?

What I like best is that I get to spend as much time as I need with my patients. I work with people at one of the most vulnerable times of their lives, and it is truly a privilege to be let into their inner circle. I also spend more time with the families of my patients than probably any other specialty, and help guide them through a very difficult time in their lives. I know it sounds corny, but I believe I make a difference every single day, and that was one of the main reasons I wanted to get into medicine in the first place. I do mostly housecalls since my patients are generally too sick to go to the doctor, and I enjoy being out in the community much more than being stuck in an office all day. Even though I really liked the idea of practicing hospice medicine from the beginning, I wasn't quite ready to stop doing general medicine (focusing on prevention and curing of illness which was the essence of my training) when I first got out of my residency so I did that for about five years before going to hospice full-time. Another con is that there are times when I have patients who I probably would've been good friends with had we met under different circumstances, and I have gotten pretty close to them and it is painful when they die. I've also unfortunately cared for personal friends and friends of family members and that has been difficult as well.

The top 5 regrets of the dying, supposedly heard by a palliative nurse, has been circulating on the internet for a little while now: http://www.huffingtonpost.com/2013/08/03/top-5-regrets-of-the-dying_n_3640593.html. Are regrets something you've heard much about from dying people? If so, which regrets have you heard the most? In addition, how would you describe the general state of mind of people who know they're going to die?

I really don't hear a lot of regrets from my patients. I'm sure they have them like anybody else, but I suppose we just talk about other things. Maybe they don't feel comfortable talking with me about regrets. I know that the chaplains and social workers ask the patients about that sort of thing.

Verified.

thank you!

If you could be any part of a bicycle what would you be?

I don't really have any questions, but I just wanted to thank you for what you do. I lost my 30yo sister a year and a half ago after a years long battle with an extremely painful cancer. Throughout her treatments, surgeries, and hospital stays her pain was rarely managed as well as it could have been. Her extremely high tolerance often made the docs uneasy, and we had more than one nurse treat her like she was a junkie.

When she went to hospice it was the first time that it seemed like the person was being treated and not just a collection of symptoms. The staff did everything possible to make her comfortable, they sat with us, talked with us, and let us vent and cry to them. It was the most wonderful experience possible under such terrible circumstances.

What you do makes such a huge difference in people's lives. Not just the patients.

Thank you.

I’m so glad you had that experience. I think that is pretty much everyone who works in hospice medicine’s goal.

Any reading recommendations for someone terrified of old age/incapacity/dying alone?

No, I’m sorry. I worry about that too sometimes.

Working at a hospice, have you ever grown attached to a patient and watched them die? How do you prevent that? And have you ever seen someone recover at a hospice or make a break through?

I have grown attached to patients, and it’s very difficult watching them die. My best friend is a hospice nurse and I remember when one of our patients died (RIP Bob) we both cried. We were talking the other day and she said you know it's seven years today that Bob died. Yeah, we get attached. This job isn’t for everyone. I think I learned from my days working in EMS that sometimes there is only so much we can do for one another. Let's face it, when someone dials 911 the shit has pretty much hit the fan. Sometimes you can help, and sometimes you can't help. But you're trying, and that's all anybody can do. I have helped a couple of people get better, or at least bought them some time to the point where they came off of hospice. There're also a few patients that get admitted when they are at a very low point in their disease process, but once they pulled through that rough patch it seems they have a prognosis of greater than six months and we discharge them as well.

So how would you choose to die?

Renal failure seems like a pretty good way to go. Most patients don’t have any pain or shortness of breath, and a lot of them get euphoric the last few days. Most of these patients are are people who were on dialysis and decided to stop and so they can also eat whenever they want for the last few days and that makes them very happy. For someone whose kidney function is completely gone, they usually have a week to 10 days so they have a chance to say goodbye to people but they don't linger for too long.

I'm a clinical manager for a home health aide service that also provides ancillary support for our hospice division. If you don't mind sharing trade secrets - what are some things that you offer your hospice clients that you think sets you apart from other hospice docs? Something that your patient's family members say "that made all the difference in the world."? And thanks :)

I don't think I can speak to what any other hospice doctors do or don't do for their patients. What I am frequently complimented on is communication and explaining things. It's shocking the number of patients who don't have any concept of what cancer is and who are dying from the disease. I find that if I take time in the beginning to explain the disease process and what we are going to expect to happen along the way it provides some relief to the patient (and their families), especially when I tell them how I am going to handle the bumps in the road. I explain to them that I want them to make all of the decisions and that my role is to educate them as to what is happening and why, and what treatment options they have and what good and bad effects they can expect from those options. Loss of control is a huge issue with terminally ill patients and I try to empower them as much as possible.

Whats the longest time a patient of yours spent in hospice? Do you ever change a hospice status?

I have worked with patients who have been on hospice services, legitimately, for years. The eligibility criteria are pretty specific, but ultimately no one knows exactly when someone is going to die. We give our best estimates but sometimes we are wrong, and in those cases we sometimes will discharge a patient with an extended prognosis.

Terminal Disease and Pain suck. But, Families almost always persist in pushing the Patient to 'try' that next miracle cure. What is your go to speech for such a scenario?

We can keep people alive a long time these days. If their heart stops beating sometimes we can shock it back, if they stop breathing we can put them on a ventilator or if their kidneys fail we can put them an dialysis. But this isn’t always the kindest thing to do, especially if their quality of life is poor. Then I ask crystal ball question I mentioned earlier.

Hi OP,

I've got a bit of a story here and some questions to follow.

My significant other of 5 years is a nurse who has volunteered with a hospice team and frequently works with palliative patients, so I know a small amount about this subject but only from the perspective of a listener.

Several years ago her grandmother, who was very important in her life, passed away and she explains that the support she received from the hospice staff had a large positive impact in her life, which is what led her to that place in her own career.

I'm not sure how it would affect me personally to work with the dieing, but I feel like it could create alot of emotional weight on a person. I have lots of respect for my girlfriend for this reason, and I see her as a stronger person for doing this.

Recently, my S.O. and I took LSD together and it was her first time doing this. As is normal for LSD, I wasn't totally sure what to expect but the experience she had was incredibly powerful.
She often tells me about the tough time she has at work (how most of the other nurses like to gossip about each other, which she hates). In her LSD trip, she told me that she saw thousands of faces, the faces of many of the palliative patients that she once helped. She said that the patients were all saying thank you to her for the respect and the dignity that she gave them on their way out.

It was an incredibly emotional and profound experience, but afterwards it was as if an enormous weight was lifted off of her and she has had more confidence at work and feels better about standing up for herself at work.

Anyways, I wanted to tell you this story because it reaffirmed to her that it is worth it to go the extra mile to give the patients comfort and dignity in their final days and that they deserve it.

Depending on the type of employee that you are, I want to tell you that if you are the type of person who ensures that your patients may have comfort and dignity, that you are making a big positive difference.

Anyways I basically just wanted to tell you that story, whether or not it makes any difference to you.

As for questions to you, I am wondering:

Are you religious? What is your religious perspective on death? What do you feel happens after death?

Do you fear death, or are you ready for it?

Thank you for sharing that story. I'd love to have similar experience some day. I'm not especially religious but I sure hope that there's another place that we go to after we are done here. I try to be spiritual, but it doesn't come very easily to me.

Does your specialty mean that, in medical terms at least, you are an expert in the understanding and management of pain? Or am I thinking of something different? Does your specialty mean you intended to work with end of life care, or did you not know? Sorry if this seems somewhat scattered.

Two of my board certifications are in hospice and palliative medicine. Hospice medicine is the specialty that works with patients who have a life expectancy of six months or less. Palliative medicine deals with the palliation, or control/removal of unpleasant symptoms associated with disease, rather than trying to cure the disease. From Wikipedia:Palliative care is a holistic, multi-disciplinary approach that includes specialised medical care for people with serious illnesses. It focuses on providing patients with relief from the symptoms, pain, and stress of a serious illness—whatever the diagnosis. The goal is to improve quality of life for both the patient and the family. Palliative care is provided by a team of doctors, nurses and other specialists who work together with a patient’s other doctors to provide an extra layer of support. It is appropriate at any age and at any stage in a serious illness and can be provided along with curative treatment.

Do people who don't have a clearly defined life expectancy receive palliative care? Like someone with a painful but not directly life threatening disease/disorder?

Absolutely. Often it is used with cancer patients who are actively being treated for their disease and who intend to continue to pursue curative treatment, or those patients who are simply not ready to enroll in a hospice program for whatever reason.

Thanks! A follow-up: I've heard it said that pain and discomfort are severely under diagnosed and under treated in hospitals today. Do you agree, and if so, what can be done?

I can’t really speak to what goes on in hospitals because I don't really go there. I do get a lot of patients whose pain is not well controlled when they first come on my service. It may be simply that their disease is progressing and it would have needed to been adjusted anyway, or it’s also possible I suppose that their pain was never well-managed in the first place. I don't have any way of knowing.

My friend Dead Laurie* was so happy when the palliative care Dr started treating her. Radiation was not helping for her glioblastoma and she felt so much better for her last few weeks.

Thank you for all you do.

*that's her name so no one forgets she is gone.

I’m glad that Laurie was able to be helped in her last weeks.

Has your experience changed your outlook on life? If so, how?

I'm sure it has. To be honest, I can't imagine any way that working with people who are dying would not end up changing your outlook on life. Not to be too philosophical, but I think your outlook on life changes throughout your life, so I really can't have any idea just how it might have changed. I can say this though, I'm reminded every day just how fragile life is, and how important it is to do things that make you happy, and to be with people that make you happy.

1.) How do you feel about the current healthcare system (and insurance) in the US compared to the rest of the world?

2.) How many hours of sleep did you get in medical school/residency? And how many hours of sleep do you get now?

1) I’d rather practice in the US than anywhere else. Maybe I’m delusional but I think we do things pretty well. I don’t really have to deal with insurance (the hospice does that for me) so I can’t comment. 2)I think I got about 7 hours of sleep during med school (my usual at the time - I’m older and down to about 6 these days). I just didn’t do anything else besides study for those first 2 years of didactics. The worst year for sleep is almost always your internship (5th year, first year post-grad), 100 hour weeks are not uncommon, nor is running on 1 or 2 hours for 36 hour stretches. At least that was my experience.

What is the residency program for palliative medicine in the US?

Fellowship after internal medicine or family medicine?

It's a one year fellowship after you finish residency. You can actually do it though several residencies (including things like pediatrics, anesthesia, or even emergency medicine), but the most common are either internal medicine or family medicine.

Are fellowships paid? If so, how much? If not, how much do they cost?

Yes they are paid. They vary across the country depending on regional living costs. You basically get paid as an additional year of residency. I would guess the averages are somewhere in the range of 50-65K a year.

I think it depends on the fellowship as far as compensation. The one fellowship that I have been involved in allowed the fellows to bill Medicare for their services so they made something similar to what the practitioners made depending on the amount of patients that they would see.

I am currently a college student about to start nursing school next fall, at some point a few years after nursing school I think I want to look into becoming a physician. Do you feel that when applying to medical schools they looked fondly on the fact that you were previously a nurse? Do you think being a nurse helped you in your journey to becoming a physician? As well as helping your patients now?

I’m not sure how my med school looked at it. I think they were interested that I had been a medic/RN and that I understood some things about medicine going in, and that I already had some clinical skills. I had to unlearn some things because sometimes we have to simplify some very complicated processes in order to teach them and in doing so there can be misunderstanding. I had a pretty good idea of the big picture before I started due to an amazing post-grad nursing teacher (RIP DH) so I’m sure that was a help in some ways, but med school is so much more detailed than nursing school that it doesn’t help as much as one might imagine.

I'm a nurse that is going back to medical school. The fact that I was a nurse didn't seem to come up that often during the interview process. It was more directed toward my desires to go back to school and how I did in my pre reqs. My biggest regret is that I didn't go straight to med school after undergrad instead of going into nursing. The question of "why didn't you do a post bac?" came up a lot. In retrospect, if I could do it all over again, I would have finished undergrad and either directly applied to med school or did a post bac bridge. But then again maybe nursing helped me come to this conclusion of going to med school. Although maybe the nursing degree did factor into the admissions process when they were deciding on whether or not they wanted to grant me an interview.

I think you’ll be a stronger doctor for having gone this route. It’s important to understand what everyones roles are in a team and you will understand things that most of your peers won’t.

How has your background in nursing influenced the way you practice as a physician?

I tend to expect more from my nurse colleagues, I think. There are many brilliant nurses who I’m sure could have handled med school if they had the opportunity (it’s just a ridiculous amount of work). I work more collaboratively than many other docs, I think.

What is your least favorite animal? Why?

Ummm OK, fair enough, I did say ask me anything. To be completely honest I don't know if I've ever given that question any real thought. I guess I'm not much for slugs. Kind of slimy and gross I suppose.

Are you afraid of death?

I suppose I am, in that I don’t want to die. Then again my quality of life is quite good right now so that may change. I am curious, and I think I’ll be ok and probably a little more accepting that the average person when my time comes. I hope I have the grace that some of my patients have. Sometimes my patients truly inspire me.

I'm currently in college right now. One of the classes I am taking right now is Biology Anatomy and Physiology. I know you've had to take those classes. My question, what is the best way to study all these different organ systems and the small details with them? I know reading is really the best way to go but maybe there is something else that can help.

After I graduated from nursing school I took two graduate courses in nursing that were taught by this amazing teacher. They were six credit hours each so they were pretty intensive, but she had this way of tying everything together so that you understood that it was all just one big system with lots of little smaller systems inside of it. What helped me most was when I could step back and see the big picture. Then everything made sense, and it wasn't there wasn't nearly as much that I needed to memorize. I Hope that helps.

I'm currently a PGY-2 in family medicine and am planning on doing a palliative care/hospice fellowship after I finish my residency. Any advice on what to plan for job wise once I'm done with my fellowship? I guess I just don't have any idea what to look for or what to expect in terms of work after finally finishing all this school. Thanks!

I agree with Dawn (below)- there are a LOT of opportunities in HPM. It is a growing field still sorting itself out and evolving. You won’t have a problem finding work, I assure you. I get emails almost every day from recruiters. Good luck!

Do you have any practical advice as someone in hospice care as to how I can best help my friend whose 8 year old daughter is dying of a brain tumor? What helps families most? I don't know how to be there for her right now.

I’m probably not the best person to ask this question, since (thank you, God) my kids are all healthy and grown up. Nancyaw (above) has some good suggestions. I think just letting people know that they are in your thoughts and that you are there for them is a good place to start. I think sometimes you’ll just need to take the initiative and do something for them rather than wait for them to ask you for help since many people have trouble with that part.

I've heard that people often start talking about travel in the days right before they die (not lucidly, in a spiritual context, but rather having the desire to pack a suitcase or something) . Have you noticed this with your patients?

I have seen this. I had a patient who literally packed a suitcase the night before she died. I have also had patients who have told that their deceased loved one has told them they will be coming for them soon.

With all the side effects of most palliative care meds (benzos, opiates), what are your thoughts on medical marijuana?

I think it's a shame that medical marijuana is illegal in many parts of the country including my state. I think that if someone is dying they should be able to take whatever makes them feel better. I've had many patients who have been open with me about smoking (or vaping) marijuana, and I encourage them to do whatever makes them feel good. These people are terminally ill for goodness sakes.

My father is at home with me, we've put him in hospice, he's close to the end. How should I talk to my kids about it, now and after he passes? They are three and five.

Your hospice will have a social worker/counselor who can help you with this. The thing to remember with children this age is that they are very concrete thinkers, so try to avoid euphemisms.

Is it true that opiates are not allowed to be prescibed in sufficient doses?

Nothing could be further from the truth, as long as you mean enough to keep someone comfortable when you say "sufficient doses”. We don’t “put someone to sleep”, and we don’t aim to shorten or prolong life; the goal is to make whatever time the patient has as comfortable as possible. There’s often a fine line between giving enough medicine to keep someone comfortable and giving them so much that they sleep most of the time and that can be sometimes be a difficult path to walk, since by definition these are very ill patients.

I just started volunteering with a hospice. From what I've come to understand, sleeping more is often part of the dying process. How then do you tell if the doses of medications you're giving are affecting their sleep? This is probably a dumb question to you, but I'm genuinely curious.

I don't think this is a dumb question at all, and it's something that I always have the back of my mind. It's reasonable to expect someone who is seriously ill to spend more of their time sleeping. I often say that I can make anybody comfortable, but the goal is to have them comfortable but still able to interact with their family and friends and if they are sleeping all the time that's not necessarily enhancing their quality of life. Things can also get a little bit hazy when someone has been uncomfortable for a long time and we finally get them comfortable and they spend the next couple of days catching up on sleep. I usually give them 48 to 72 hours and then reassess how they are doing overall.

Why did you choose to leave EMS? I'm curious as an EMT hoping to be a paramedic.

For me, it was an opportunity to go to med school, otherwise I’d probably have stayed. The only thing that bothered me was that the fire department can be a paramilitary type organization, and sometimes yo have to listen to someone who has less training/education/knowledge simply because they have more seniority. That used to drive me crazy. But you work one day and then get the next 2 off, you see interesting things and help people who really need help. It was a great job.

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The death rattle (or more correctly described, terminal secretions) usually results from a loss of the swallow reflex. Patients continue to produce saliva and this pools In the back of the throat. When they breathe in and out this makes a rattling sound. Studies suggest that this is much more bothersome to family members and caregivers than it is to the patient. Typically we reposition the patient and/or give them medications to reduce the salivary production. To answer your question, yes this is fairly common in people who are actively dying.

Thank you so much for the work you do. My dad was on hospice and palliative care at the end. The nurses we had were wonderful and took such good care of all of us. You and your colleagues are amazing people.

What led you to this line of nursing?

I work with some really amazing people, and I think most of the credit should go to the people that are in the trenches: the family members, CNA's, and nurses who spends most of the time with patients and their families. I'm just the doctor who pokes his head in the door every so often.

Other than opiate painkillers, what kind of treatments do you provide?

I help resolve whatever symptoms the patient is having. When someone isn't sleeping well, I will try a number of different medications until I find the one that works the best with the least side effects. The same for when someone has nausea/vomiting, or shortness of breath, or anxiety, or any other type symptom associated with their disease. I also focus on prevention of symptoms such as seizures. The hospice I work for also provides massages, music therapy, as well as a team social worker and chaplain who work with the patient and family throughout the process and after the patient's death.

I'm a young (Ha!) surgical resident and one challenge I have encountered is the patient who is sick or dying (some more acutely than others) and a family member comes in with "information" (sometimes even referenced and published/peer-reviewed) about some treatment, remedy or drug that they want for their loved one. While the information is always examined and considered, there is so much poor medical advice on the internet and traditional media. I've encountered problems having to explain why we recommend a certain course and are averse to others to laypeople so deeply invested in the treatment of their loved ones (and in many cases, themselves).

How do you approach misinformation and differing methods of treatment of disease when dealing with your patients?

I don't know everything, nor do I ever pretend to know everything. When someone approaches me with some sort of unconventional treatment option, I will usually look at it and try to research it a little bit before responding. You're definitely right, there's a lot of misinformation out there on the Internet, so I often start with asking them for the source of their information. This way I can come back to them with credible data and explain to them why I think it might or might not be something they would want to try. Ultimately it is up to them however.

Okay, I'll be that guy... Have you ever experianced anything paranormal? Or heard of stories from other RN/MD's in your line of work? If so, share :)

I myself have never experienced anything paranormal in treating my patients, but I've heard many stories. I also went to see a patient who had died a couple of minutes prior to my arrival and when I went in the home the family members were visibly shaken. Apparently a minute or two after he died there (and a minute or two prior to my arrival) was a phone call which caller ID said was from the patient's home which was locked up and which no one had any access to (the patient had died in his adopted daughter's house).

My mother is probably about to enter palliative care. A month ago, we didn't know she was sick. What would you tell me, and what should we do?

I'm so sorry, this has to be a very difficult time for you and your family. Please understand that your mother is sick, and that she's just not going to be able to do the things that she used to be able to do and that it's not reflection on how much she loves you. This can be a time of great reflection on your mother's part, and you should just take your cues from her. In other words, let her set the pace as to when to talk about things, or when to do certain activities. This is the time to tell her all the things that you've always wanted to and to let her know how much she means to you, I think.

I have a personal question. My grandmother has Alzheimer's and today I found out my Aunt has decided to allow Hospice into her assisted-living facility to stay with her. However, she is not on her death bed. She probably won't live another year, but she also isn't going to die tomorrow. Why would hospice come now? What does that benefit if she's already well taken care of? Also, out of curiosity, what is the typical "cause of death" for an Alzheimer's patient? Do the plaques and tangles actually kill them, or is it usually some sort of complication from something else? She's been taken to the ER several times this year due to dehydration. She also has Type II Diabetes and I believe she may also have heart disease.

The hospice benefit is for patients whose death is expected, should their disease progress as is expected, sometime in the next six months. The most common cause of death in an Alzheimer's patient (or pretty much any patient with end stage neurologic disease) is aspiration pneumonia (food or liquids that end up in the lungs instead of the stomach which causes a chemical pneumonia). Sometimes end stage dementia patients simply refused to eat, or will chew their food up but just keep it in their cheeks and eventually spit it out (pocketing). The plaques and tangles don't kill Alzheimer's patients.

I've heard some cancers can be brutal right up until death. In your experience, what terminal disease inflicts the most discomfort?

Pancreatic cancer is notorious for being very painful. Fortunately, in my experience, less than half of my pancreatic cancer patients have any significant pain, but when they do it can sometimes be challenging to treat.

Hi there. Thanks for doing this AMA. I'm a mental health counselor who is about to start practicing therapy part-time at local nursing and elder care homes, in addition to the work I typically do with adults at an outpatient level of care. I've enjoyed working with a handful of aging and elderly individuals in outpatient settings before, however I don't have that much experience with the geriatric population in general, nor do I have any extensive experience at the hospice/palliative care level. What insights, if any, can you offer into the particular mental health issues that this population tends to face? Specifically, what kinds of mental health conditions do you observe the most frequently (I imagine dementia/neurodegenerative disorders and depression might come up quite a lot), and how often and in what capacity do you ever collaborate with mental health counselors in this setting?

Thanks again for sharing!

I think depression is a very big issue in the elderly population in general, and certainly in the terminal ill. One of the problems that we have with treating depression is first determining how much of this is simply a natural reaction to a terminal diagnosis, and then if it is clinical depression, how best to treat this in someone who has a life expectancy of two months when most SSRIs require 4 to 6 weeks before we see full effectiveness. We will sometimes use methylphenidate in these patients as it seems to give them a little bit more energy and brightens their mood, however it also usually negatively affects their appetite (which is often poor to begin with). It is not unusual for me to consult with a psychiatrist, especially one who has already been involved in patients care, or with a mental health counselor who has already been working with the patient.

Has watching the process of dying lessened or worsened a natural "fear of dying"?

Also, do you believe in the afterlife?

(My aunt does this and has some interesting tales about her patients "rejoining" with loved ones ... or at least hallucinations of them.)

Nearly all of my patients have had a peaceful death, so I think that probably has lessened my personal fears. I am a scientist by nature whose father is an engineer but I have seen things in the course of my work I have greatly enhanced my faith. I've seen a great many patients who have have visions/conversations with predeceased love ones. What I find interesting is that they don't seem to have the same type of interactions with living family members who they just haven't seen for a long time.

Have you noticed any patterns in the personalities of people who suffer from certain afflictions?

Do you know of Dr Gabor Mate and his views on this?

I don't know of Dr. Gabor Mate or his views on this subject. I remember being taught that there is a high correlation between pancreatic cancer and depression although I don't think it is clear exactly what is the exact nature of that relationship. I certainly would not be surprised to find out that there was a correlation between disease states and mental states.

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I use it. Probably not as often as I should.

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I hope you don’t mind but I’d prefer to talk about my work. Thanks!

I think your answer is a no brainer for the question I'm about to ask but here it goes.. euthanasia how do you feel about it. And did your view come AFTER seeing sick people or before. One more thing... morphine, dilaudid is that the easiest way to drift out of it all?

I answered this question earlier. I don't think that morphine (or any narcotic for that matter) will produce the sedating effects that you are hinting at in your question, unless they are at very high doses.

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I have seen many, many people whose faith was a great comfort to them.

Hey, I work part time as an EMT and go to nursing school. I'm also thinking about getting my paramedic license after my RN so I can keep working on an ambulance. Anyway, hospice care is one of the fields that I am interested in for my nursing career, is there any way to kinda tell if it's right for me before I try it? Also, any general advice for someone who's planning to jump around in the medical field like you seemed to have done?

I think medicine is such a wide field that there's a place for everyone. I would advise you keep your eyes open, and try anything that seems interesting to you. I never thought that I would end up in hospice medicine when I started medical school, but I believe it's exactly where I should be. I see a lot of really good people try hospice medicine and find out that it's not for them.

Hi, my 92 year old mother died after emergency duodenal ulcer surgery. She spent three months in the hospital post-surgery, and recovered to the point where she was preparing to move to a rehab facility. While still on a feeding tube, she aspirated a cup of liquid into her lungs, and things quickly went downhill. After much encouragement from her doctors to remove her from life support, we agreed. The attending physician prescribed a dose of Dilaudid, and once administered, my mother died within a few minutes. It appeared to me that she died from an overdose as opposed to a lack of oxygen. Is this common in these situations? I always assumed that when a person is taken from life support they simply die naturally. In my mother's case, it was as though she was euthanized.

I can’t really comment on your mother’s specific case since there are other things that were going on that neither of us are aware of. I sincerely highly doubt that she died of an overdose. More likely, the narcotic took away your mother’s oxygen hunger and she resumed a normal breathing pattern. Unfortunately, in end stage pneumonia patients can really struggle to breathe during the last few hours. The dilaudid prevented that struggling.

Hello, I am a nursing student that is taking a palliative care class this semester. I'm curious as to what non-pharmacological treatments you would suggest?

I've seen patients who could not be made comfortable despite many different kinds of medications be calmed and soothed within minutes by music therapy. I would also like to emphasize the power of human touch. I try to touch every single one of my patients every visit because I believe it is one the most therapeutic things you can do. Hold their hand, stroke their hair, rub their shoulder, whatever, but make that physical connection.

I am an RN. I was wondering if you have noted any common "regrets" that people seem to have at the end. Also, I use "touch" a lot in my care. Have you seen positive effects from touch, even in an unconscious patient? Hand holding, stroking of the forehead etc.

I just saw this after answering the question above. I don't think you can overemphasize just how powerful touch is. Especially when you're talking about people that are in the dying process, I think that there is a tendency to assume someone is unconscious when they're simply unable to respond or even open their eyes. I think we should always assume that the person can hear what is going on and can feel what is going on unless we are certain, absolutely certain, otherwise.

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No, I have never experienced any type of near death experience with any patients. I have heard stories from my patients about experiences during surgeries and many patients start seeing and talking to predeceased loved ones in their final days.

Have you treated or are treating dementia patients? What are your experiences with these kinds of patients?

I'm a med tech who works at a memory care unit and have interacted with a lot of hospice nurses treating some of my patients on hospice, but I've never had the time to sit down and ask them about what their experiences with these kinds of patients and other kinds of patients were.

Thank you for doing an AMA. I learned a lot from this and hope to be a nurse soon. Maybe this line of work (hospice, pallitative care) could be in my future!

End stage dementia is a really sad disease, not so much for the patients as much as it is for the families. A large percentage of hospice patients have end stage dementia. It can be difficult because they can't tell us what they are experiencing and we have to rely on visual cues and guess work.