Marissa, I'm sorry to hear that this has been such a difficult time for you, and that you haven't had the support that you need. What kind of support do you need, or what would have been helpful before? Have you been able to work with a social worker, and/or a chaplain (if you are religious)?

One of your husband's nurses should be able to help you get support. You could talk with a nurse and explain the situation to them, and they should be able to help you find a social worker or another person who can help.

My husband is dying right now and i have bene making all the decisions alone no support and 2 small kids to support it has gotten so bad i complained they were not turning him nexytt day cps came out took my kids the hospital complained on me all i need was help gettin home

it would helped if i had support now i have to move all alone and get secure before they can come home.

i want dnr but his gfamily is arguting with mehe doesnt wanan be a vegetable!!but the hospital is lisntenimh im thatw ay

Conversations with my father took place informally over many years.  It was about the last year of his life that we discussed more specific things because I knew what he was going to be dealing with.  He was clear that he wanted to be comfortable with no heroics.  That's when we began putting things on paper.  I knew when and what was enough for him but it was helpful to have my dad's wishes on paper when my brothers questioned whether we should be doing more.

Thanks for sharing, Kris. When did you have this conversation (or conversations) with your father? Was there something in particular that triggered them?

Without intimate conversation and putting my father's wishes on paper I would have struggled with decisions at the end of his life.  It was a mutual gift - he gave me directions and I honored his wishes.  Don't wait, start the conversation with your loved one and think about your own, too. 

My father died a few years back from lung cancer.  We cared for him at home, where he died.  I was relating this story to a friend, who said that he'd never want someone to care for him in such a way.  I thought he misunderstood, because I can honestly say that this was the only time in my life where I feel I was actually in a state of grace.  So I wrote this to my friend and thought it might be appropriate to share now.

About my father and dignity in death.  I see so clearly in you the proud refusal to allow anyone to care for you in a diminished state.  But I tell you it is the ultimate act of love.  As we lie passing, feeble, disposed of most lucid thought, where even our body's automatic functions need attending to, it is not pity we elicit in those closest to us; it is the purest form of love. In their dread of a future without you, they do not see the emaciated broken person before them.  They see the loving father, the faithful husband, the playful generous man, the frustrated dreamer, the peacemaker who failed only with his daughter, the man who communicated through action not words, the man who wonders if he lived a good life.  No amount of physical decripitude can overcome these images- for they are not memories- they are still the living person laying in front of you, and you cannot bear for these images to become only memories.  The opportunity to care for this person is the opportunity to live these images, to grasp them in the fullness of love until with a last breath they must be let go.

And so, what you give to others is the last chance to love you as the completeness of yourself.  And I would ask you, in the hecticness and pettiness of everyday life, when else do we see and love each other so completely?

First I should start off by saying we were a part of a "smaller" community.  My Dad grew up and had his practice in Duluth throughout his 58 years.  He knew all of the oncologists; he worked with (by reputation) and knew them personally.  One of the doctors daughters swam with me.  Other doctors kid's had worked with me and so we knew each of these doctors individually, which made everything a little easier.  

The best thing in care - is to have one point person, regardless of the disease state or the diagnosis, one person should be the point of contact for everything.  This is the way that it is in Customer Service organizations and in other areas of business.  There is no way for any layperson to know which specialist deals with which area or who they should call if they are having trouble with pain, or drug management, or a new problem, who they should call.  If hospitals want to evolve, they should have each patient have one case manager, and each case manager should have no more than 10-20 "cases" per month.  If one patient/case dies, another should be added.  

My Dad was a healthcare professional.  My little sister was sick throughout most of her youth so we learned about hospital beauracracies and politics early on.  My father's best friend was a world renowned researcher and doctor, he helped my father find the best doctors to help with his care and helped him evaluate the best course of action. The best healthcare professionals and hospitals are patient centric. To be truly patient centric a hospital or care center needs to have one person who helps you navigate everything and makes medicine easy.   Whether that is insurance, medicine, doctors, even the lay out of a hospital, and the many tests that are run (and why patients are being tested), who the different people are that come to visit you each day.  That is the only way that hospitals can be great at care.

Currently people have about 3 different doctors.  As a pharmaceutical representative I saw this a lot.  Each week I was in a new hospital and I would see some of the same patients.  I would ask them why they were here this week, and every time it was for something different.  Often, patients would start with an Internal Medicine/Family Practice/Adolescent Health/Community doctor and be referred elsewhere.  If a doctor saw any signs of anything like lets say the patient has allergies, the doctor would refer them to an allergist.  Lets say this patient is a woman, she would also, annually see her Ob-Gyn.  Lets say she shows no sign of allergies after getting tested, but is having trouble breathing, so the doctor refers her to get a chest X-Ray from a Radiologist.  Now she has 4 different doctors working on her particular case.  She is confused anytime she goes to a new place about why she has to give her insurance, document previous illnesses and injuries, list emergency contacts and her current medications, vitamins or supplements.  Wouldn't it just be easier if you had one person who met you at the door, walked you to your appointments, made sure all the paperwork was already taken care of and explained what the doctors said after you saw them?  That's what patent centric healthcare looks like. Or, lets say she decides she would like to see someone that treats alternatively before going the route of prescriptions and x-rays.  She sees a chiropractor and an acupuncturist.  She reacts favorably but still has a terrible cough.  She goes back to her regular doctor and her doctor wants her to see a pulmonologist.  She goes to the pulmonologist and the pulmonologist runs tests noting funny red bumps on her arms and hands (due to the acupuncture).  She doesn't know to tell her doctor about her acupuncture activity (silly example, I know), but the pulmonologist believes he should prescribe her with a topical cream to treat the bumps, and something else to treat the cough.  Then what?  This is why its easy to get confused or not understand what's going on...  Both the doctor and patient become confused and just like if you bring your car to the mechanic and someone fixes your paint job rather than your screaming brakes you become annoyed, frustrated and think the doctor is inept.  

In our case we had our favorites; doctors, nurses and even receptionists we knew and saw, liked and trusted.  They knew all of us by name and knew our whole family history, so they didn't talk down to us (or treat us like we didn't know medicine or couldn't understand complex illnesses).  

Please let me know if I can shed anymore light on this difficult and important discussion.

Kelsey, thank you so much for sharing your experience.

I've seen how important it can be to have a family member or friend who can be the patient's advocate, keeping track of treatment options and watching the overall well-being of the patient in a way that the busy specialists can't do. But it's equally important that the medical community be willing to work together with this person and the family -- especially when the hospital doctors do not know the patient, as is so often the case now.

When you talk about medical personnel including the family in the decisions, is this the kind of thing that you are talking about? Could you help me get a better idea of the ways in which this could be done, or what you wish would have been done with your father?

My father was diagnosed with cancer at the young age of 57.  He went from a young, vibrant, active-engaged member of our community -- to completely dependent on other people in 15 short months.  As a business owner he could not inform the community until after the business was sold.  This tore us (his family) apart and also made us stronger.  I didn't know that my father was diagnosed with stage IV small cell carcinoma.  He told all of us he had lymphoma, a curable form of cancer.  It wasn't until after he died we learned it was lung cancer.  Had we known up front what kind of cancer my dad had, decisions about his care would have been very different.  I know we wouldn't have spent thousands of dollars and hours in experimental treatments in the last 3 months of his life.  We would have worked to ensure a greater end-of-life experience had we known that it was the end.  

At the end, he lost his ability to swallow, stand on his own, breathe, think, make statements, walk and do normal everyday activities.  Every headache and fall was life-threatening.  His quality of life was completely gone.  It was SO hard to watch helplessly as this incredible intelligent doctor, became child-like in a matter of weeks.  I wanted to help end his pain and suffering.  To go from one of the most respected people in your fields to not even walking or swallowing on your own, made me feel hopeless and helpless.  No one knew our pain, even to this day, no one understands what we went through.  

My sister and I were 14 and 17 when my Dad was first diagnosed and 15 and 18 when he died.  I watched my Dad suffer, held his head in the toilet when he became too sick from the steroids, and walked him from place to place to ensure his stability.  In the last 4 months I also became his chauffer, something he hated.  We had no idea what to do.  No one could help us and all we wanted to do was limit or eliminate his pain.  Pain management at the end of life is the key to mitigating suffering for both the patient and the community (family and friends).  Doctors kept saying they were worried about drowning or harming him with too much morphine.  Why?  He wasn't going to live.  Why not ease his pain?  

Recently his sister, my aunt, died at 64 of the same thing.  For the final two-weeks of her life she didn't drink, eat or talk.  She had a bath twice a day and I requested that they inject her with morphine 30 minutes before each bath otherwise she would just wail and cry out.  Her suffering, no matter how brief, was very hard to listen to.  

Families and friends know their dying family member better than anyone.  I appreciated the care my father was given in hospice; he was treated like he was at home or in an in-home setting.  My aunt, on the other hand, was in a cold hospital room; thankfully they let her have her own room.  

Since our experience with our family members, we have all had conversations about our own care and directives.  I would hate to be incapacitated and quietly suffering.  I am fairly confident my wishes will be followed by my family, but not by my doctors.  Doctors, throughout my life, have largely ignored family members, insisting that we are too emotional or don't know what we are talking about.  

If I were to do any work on this initiative I would fight for high quality, consistent pain-management and the incorporation of family in any and all decisions especially in the case of physical or mental impairment or incapacitation.