Open eyes, quiet heart

Man has been dying on a regular basis for millions of years; should we not be end-of life experts?  Why do I feel the need to devote pages and hours to this depressing topic?  Is there a goal to my project, beyond venting the shared suffering which soaks my soul? What is my purpose?

For man, denial of death, marginalizing its affect on our lives, is a major project. Far beyond hiding the bodies of the dead, we structure our lives to avoid recognition of mortality, build edifices to immortality and forbid open social interaction around dying, accept when it is too late.  Finally, at the time of the inevitable, we isolate our hearts from others and from ourselves, and thus avoid a glimpse of the abyss.

Through history, coping with the frailty of life has fallen to religion and philosophy. We seek comfort for transient existence through meaning and the possibility of an eternal soul.  We quest to be removed from the trap of the body and elevate to the infinite.  Such magnificent concepts are beyond the critique of the physician.  Nonetheless, I cannot but note that for many people, who approach the end of life frightened, in pain and deeply alone, they fail to bring peace.

Thus, we suppress, we avoid, we deny.  We structure our lives, even the careers we chose, what we create, the alcohol we drink, who we love and who we hate, to suppress this demon. I believe that often the unstable ground on which we build the foundation of our lives, is denial.  It is not death itself, which disrupts daily life so deeply; it is what we do to deny mortal transience.

When we do become ill, denial is the patient who refuses to take pain medication for terminal disease and will not tell his spouse about the illness.  It is the man with necrotic leg ulcers who will not stop smoking.  The dying grandmother denied contact with her eight-year-old grandson, so as not to “upset” the child.  Every one of us who fails to take care of our body, as if we truly have a choice.  Families, patients and doctors who endlessly fight incurable illness, obliterating with care precious weeks and months spent in clinics and hospitals.

I believe in the strength of man.  I believe that we have the possibility of doing so much more to cope with reality, than toxic emotional suppression.  I believe we are capable of opening our hearts to the known and unknown in a way that does not burn us down.  I believe men and women can approach the eternal with open eyes and through that acceptance, find peace.  I write to say, “Hey, by just talking about dying, just recognizing denial’s hold, perhaps we can be free, if just a little.”

Thus, my project, my focus on hospice, palliative care and end-of-life, while not gentle or easy, is not tragic, nor does it emphasize loss.  Rather, it is my goal that by gradually moving into some acceptance of reality we can find empowerment in our lives and by opening our eyes for bright moments, we can draw from man’s deep and infinite strength.  Then, perhaps, we can live with quiet hearts.

13 Comments

  • Once again, Dr. Salwitz, thank you thank you thank you for this post and for your wisdom. I truly believe that we indeed build our lives on that very unstable ground of denial of our mortality. There is nothing depressing in knowing and accepting the truth -- just the opposite. You said it best -- facing our mortality with open eyes and a quiet heart can give us our freedom. Thanks.
    • James Salwitz, MD
      Much appreciated... thanks, jcs
  • Kathy Stevens
    As usual you have spoken for the community of care givers in the Hospice world. I feel and hear ever word you wrote. I have tried to say those things so many times but could not find the right words, and I am the low woman on the caregiver rung, therefore not really listened to. Thank you~!
    • James Salwitz, MD
      I am honored. Thanks, jcs
  • Ray
    We recently started working with Hospice. At first I found it difficult I was having difficulty accepting the fact that my wife will die soon. I found this blog especially meaningful. As time passes now we have come to accept the reality of things and i'm thankful that there has been time to bring the family together and to slowly accept the inevitable. thank you!
    • James Salwitz, MD
      I wish for you peace and love, Thank you for your comment, jcs
  • Liz
    Talking with several relatives, who were making decisions about ending treatment/life prolonging support, and myself having a cancer with no cure, I also think that dealing with grief comes part and parcel with this - so it is, on some level about loss (I realize on this we do not agree). I know I grieved in advance for my relatives I knew would die (as opposed to my brother and other relatives whose death was sudden), in order to come to terms my self with my cancer that has no cure I have to grieve for myself - for the future I will not have with the people I love… Yet to get to the point where I am not fixated, panicked, anxious… of that aspect of this diagnosis, in order to get on with living, I need to think about death - my death… and grieve. In order to get on with living I had to also grieve my losses (a process I am not done with, by the way, but I am not nearly as focused on it as I used to be). And grieving is painful - for me, for others. I know when my dad wanted to talk about it around 2 years before he died, the rest of us didn't want to hear about it because we didn't want to think about it and have to face the pain of grief. He was in the middle of that process of really thinking about his mortality. I think that made a difference when he chose to pull the breathing tube and died later that day (had in infection he would die of anyway which was complicated by post polio syndrome). My one aunt and I had a conversation about her stopping cancer treatment last summer and we cried together, but she didn't want to tell her kids at that point as she didn't want to upset them. I also think she wanted to get a grip herself before she told them and then help them deal with her decision so that she, emotionally was at a point where she could do that. I think that what happens if people wait to think about this until very near the end of their life they are also caught in the emotions, fresh pain and grief that comes with when you finally really face your own mortality or that of someone they love. We all sobbed and sobbed when my dad died, but there wasn't the sharp stab of pain the way there was when my brother died unexpectedly. We had already started the grieving process with dad and were in a different place emotionally. He was in a different place too, having tied up many loose ends, had conversation he wanted to have… he said he was ready to die even though he (as a minister) didn't know anymore if there was an afterlife or not. I think that by "denying" (in quotes because at some level we all know that) that dying is part of living, that dying of cancer (or other illnesses that linger) is likely to cut lives short or to send out signals that either we, as the patient, don't want to talk about it, or that our family sends out signals that they don't want to talk about it, we make death more painful, not less. As a society we have limited practical guidance on how to handle this kind of stuff. Sure religion speaks to it philosophically, but no nuts and bolts, no road map. Heck often people don't even know what to say to the family and friends left behind when someone dies. We also fail to openly recognize that grieving is a process that you are not "over" in a week or two, rather it takes a long time and what happens is not that you get over it, rather that the periods of intense grief become shorter and further apart. And the grieving person (be it the one dying or the family and friends) is often left to travel this path of grief alone. This is where I think the focus needs to start WITH the diagnosis and not with closer to the end of life. While people need hope, when appropriate, whether or not anyone address it, for most people there is also "the death" aspect of receiving a diagnosis of any potentially terminal illness. This is a conversation directly or indirectly on many cancer lists. If oncologists, psychologists, family and friends… would openly talk about thoughts of death, grieving in advance, etc. is part and parcel of a cancer diagnosis for many, it would be more out in the open. If a road map was handed out that talks about the various ways people deal with a cancer diagnosis, how grieving in advance is woven though that for many/most patients and families; that even if the topic is 'forbidden' in the family or in the oncologist's office this doesn't mean it goes away, it just goes underground… and the message is sent that it is unacceptable to talk about this YET. Save it until you are closer to death. My oncologist tried hard not to have to answer the question about if I were to die of my most recent cancer, what about it would kill me. Instead he kept focusing on developing treatments, we don't know what the future would bring. I wasn't asking for information about hope at that particular point in time (I had asked about it at other points in time), I had asked for information about death. I almost didn't get that. My aunt's oncologist, four months before she died, was not responding well to chemo with this relapse, she had talked about stopping treatment with him had not brought up hospice, her end of life wishes… instead tried to discourage her from stopping treatment because at least some tumors were sort of responding… I n my opinion this death talk is even more of a minefield for oncologists because you have to deal with the death of so many of your patients, you are human too with your own hopes and fears - this needs to be something medical students need to think about, and have to figure out how to handle so much death and yet at the same time keep from being pulled under by it. Just like other humans some oncologists deal with this by not dealing with it. As a result they don't open this topic up as one that is part of treating cancer and deflect patients questions, postpone end of life discussions, keep offering treatment, not correcting misconceptions that this treatment won't cure the patient (a misunderstanding many patients appear to have according to a recent study)... I think if we talked about this from the beginning, in ways people could hear it, helped them with the issues… then when you get to the other end of the illness, it is more likely people will have thought about palliative care and hospice; end of life issues and part of your "project" would be unnecessary because it would have been part of the conversation from the beginning.
    • NKim
      Liz, I really liked your idea. - i have a inflammatory breast cancer, stage 3. It`s early but i am thinking about death. It`s a path that all will take sooner or later. Thanks Ki
  • Eileen Burns McNally
    Some of the most honest, most tender moments I shared with my mother were when she was dying. I was honest with her as I was not able to be with my dad..to his and my detriment I see now... I shared my heart with her and told her that I was going to miss her and wasn't sure how I was going to do without her in my life but that I would figure it out somehow... Those times together are so precious in my memory and I thank God that I didn't run for cover and try to hide from my feelings and the truth that she would soon be gone.. Thank you again for another excellent post...you have an exquisite way of expressing hard to express thoughts...
    • James Salwitz, MD
      I am very glad you had those remarkable experiences, Thank you, so much, jcs
  • Today's post has made it into my "Best of Dr. Salwitz" file...right next to "Riding for Amy." I'll be posting it on FB. Thank you for writing and sharing your wisdom and humanity.
  • Really lovely, Dr. Salwitz. A balm to quiet the anxious heart.
  • Cynthia Witherill
    I am excited to see that some doctor's have the right approach to end of life, so congratulations. I am 60 years old and just received my Vocational Nursing license and will be getting my BSN next. My passion is hospice care. It should be a beautiful, comfortable loving journey. Acceptance is always key. I feel blessed to have read your article. Keep up this noble journey. CEW

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