End of Life Family & DiseaseDecember 13, 2013

Kicking the widow

By James Salwitz, MD

One of the most satisfying sports is to make ourselves feel better by degrading another.  What better way to make up for our own inadequacy, then to shove someone else’s face in theirs?  We see this at work, in our families, in politics and in almost every type of social interaction.  Nonetheless, it is particularly painful and tragic when we project our own fear and frailty onto someone that is dealing with the consequences of disease and even death.

Not long ago I sat down with the wife of one of my patients.  He had recently died of lung cancer.  He had been a particularly proud and private person and had kept most of the travails of the disease from friends and family.  Happy to give him the dignity and freedom he wished, she shouldered his needs. With him every moment, she was a remarkable and powerful support for over a year.  By her love, guidance and care she gave him not only dignity and comfort, but helped him to live longer.

At the end of his life, when the disease was present, but quiet, he wished to return to the land of his childhood, his roots, by visiting his family home in Greece.  With great effort she scheduled the trip, organized his medicines, arranged backup medical care and of course escorted him on that final journey.  It was a wonderful gift.

Upon arriving in Europe his health deteriorated as the cancer grew explosively and multiple terrible complications followed.  Only with great effort was she able, as he wished, to get back to the United States, where he was immediately hospitalized and died three weeks later.

The casket was barely closed, and the funeral crowd drifting away, when it started.  His friends and family, their friends and family, saddened by his death and shocked he had not shared his suffering more in life, attacked her.  Why had he gone to Greece?   Didn’t she know he was sick?   Wasn’t it a bad time for a vacation?

They cornered her in that most vulnerable time, those first days when her heart had been ripped out and placed in the coffin.  “The airplane killed him.”   “The change in climate made the cancer grow.”  She took him from his doctors, leaving him to quacks and faith healers who committed him to die.   If he had really been so sick, then he would have told them, so the insane voyage killed him. It was her action, her inaction, her desertion, her fixation, her selfishness and even her obsessive love by which she neglected him to death.

Now in truth, she was an angel, the perfect caregiver, who gave everything, including her soul, to the man she loved.  It was a time when there were dozens of daily decisions, all of which felt momentous and few of which had lasting effect.  They clung to each other and fought for life and hope.  However, in the end he died, not because they did not love and did not care; he simply had a nasty metastatic cancer and it killed him.

Her friends and family needed a salve for their guilt at failing to help or to appreciate his needs in life. Thru horrible words they sought to save themselves by crushing and belittling her gift. Still, their words cannot be justified and can barely be comprehended.

How often do we carelessly add to another’s grief or fear?  “You had breast cancer five years ago?  My neighbor died of breast cancer that came back after ten years.”   “Your mother had surgery at Main Street Hospital?  Aren’t the best surgeons at Hope Hospital?”   “Well, what did you expect to happen, you smoked!”  “Of course it she would have done better, if you had just listened.”  “You pulled the tube?  I guess that was the right thing to do, but did you hear about the guy who woke up after eight years?”

Obsessed with our own pain and loss, we cannot help but open our mouths and spew out trash, which multiplies suffering.   It is a corrupt contribution to the grieving process. Maybe we even think that it helps the victim of our utterance.  Perhaps, but I think it often serves only the need to protect our own mortal inadequacy and distance ourselves from empathizing with true emotional pain.

There are several lessons.  First, you do not need to talk. If you are not sure what to say, don’t.  Just being there, a touch, a hug, goes a long way.  Second, you cannot fix it.  There is nothing you can say to take the grieving person, the scared person, the alone person, from suffering to happy in a couple words.  It takes time for us to absorb the loss into our soul.  Make your goal simpler; just give support in the moment.  Unless you really have a dramatic insight, do not play therapist.  Finally, before opening your mouth, connect to your feelings.  If you are frightened, anxious, confused or angry and hurt, beware.  This is dangerous ground and ripe for you to utter something stupid and hurtful.

In these challenging times, we rarely mean to hurt one another.  However, sometimes, overwhelmed by our own emotional tumult, we give pain, instead of hope.  Fortunately, it really is not that difficult to lend support and help healing.  It entails thinking a moment about what the loss means to us, thinking about what the loss means to the other and gently holding a hand and heart.

 

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15 Comments

  • Ray
    Great advise, "think before you talk hold a hand, give a hug, etc". As I try to deal with the details of my wife's problems many friends and family come to offer support and ask what they can do to help. There really is little help needed. I have found a simple hug or hand brings so much warmth and understanding. I think the problem is that one feels alone in this new situation and unsure of what to do. As always thanks much!
    Reply
  • Mildred (Mimi) McGuire
    Yes, many folks are intimidated at facing death and don't know how or what to say. It is so simple to offer a hug, hold a hand and tell the person you care and love them. Spread love and celebrate a person's life..........Loved the article and always enjoy reading your posts and especially sharing them with my friends and family.
    Reply
  • Liz
    People can be such idiots at times, even if by accident. Think first then open mouth should be the first rule followed. The list of insensitive comments or "blaming" comments that can be made to those left behind when someone dies of cancer (or of something else), is really long unfortunately. In some cases, especially with blaming comments, it says more about the person making the comment than the person receiving it… that of course, is hard to remember when one is on the receiving ends of the comments or is in the middle of being blamed (directly or indirectly) for the person's death - especially if the person receiving the comments is privately running all the "what if's" though their brain as well. What if we had decided not to go to Greece right now and had gone earlier or later after the crisis and maybe then he would not have died now. What if there were better back up plans. What if, with 20/20 hindsight, we had done or not done X…
    Reply
  • Penny
    Great advice. It's always good to remind ourselves and others to be kind and thoughtful with our words. Especially when dealing with those newly bereft of a loved one, or dealing with the caregiver of the desperately ill. Unfortunately, some of those who most need to hear this probably don't see themselves when they read this sort of thing. Absent true empathy and understanding, there are those who aren't just clumsy, but are actually unconcerned with the pain they inflict. This is when the vulnerable caregiver needs a strong advocate, to remind them to step out of the woulda-coulda-shoulda thoughts. Good grief counselors are a godsend and help the surviving loved one to refocus and stay sane. Bless that widow's heart.
    Reply
  • Margaret Fleming
    Bless you and bless you. Similar words may have been dumped on her husband out of her hearing. It happens.
    Reply
  • jerseyRN4726
    Potent. Thank you.
    Reply
  • D Someya Reed
    Yes, this is very good advice. I wish that your story was "based on" a couple rather than a retelling of a true incident but I suspect all this really happened as you recounted. As Penny stated above, the worst offenders likely don't see themselves as doing anything inappropriate. In my case, the only people who made comments such as in your story were not family, friends, neighbors, hospital staff or even acquaintances but members of the hospice team we had as well as their management. It wasn't restricted to that particular hospice but also other hospices through their bereavement "facilitators" and even staff of the state hospice and palliative care association. Oddly enough, the out-of-state hospices were better (mostly) and, in hindsight, it may be more of a protectionist thing similar to what you're describing but for the industry. I hadn't really thought of it this way but the in-state hospices seemed to rally round the idea that "their own" could not be responsible for any such wrongdoing so it must have been myself and our family, as indicated by their comments. Considering all that happened, it's difficult to see the direct hospice staffers/management as people let alone capable of having feelings and frailties common to the general population. After all, they do claim to be "trained and expert" in this. Good post but unfortunately "they" will neither read it nor "get it" even if they did.
    Reply
    • Penny
      I'm so sorry you had to experience CMA syndrome from hospice. I don't doubt that it happens. A lot. Despite being told that hospice workers are "trained" for the grief counseling aspect of their work, I don't think I'd trust them with it, frankly. Good grief counselors are worth their weight in something very valuable; but, it's a simple fact not all grief counselors are in the same league. Not to mention that I'm not at all convinced empathy can be trained in the work setting, if the worker doesn't already have this trait to begin with. It could be honed and directed, but there has to be a true internal ability to empathize and put the other person first to begin with. This isn't to say I don't think it's possible to find caring, knowledgeable, and empathetic people working for a hospice. I'm just saying it isn't where I'd look first for a counselor. That's a sad state of affairs, but there ya have it.
      Reply
      • D Someya Reed
        I agree with all you've said. Here in California, maybe elsewhere, hospice bereavement staff cannot be called counselors or therapists or claim to provide counseling or therapy since these imply psycho-therapeutic competency. Hospice bereavement staff are merely "facilitators" and nothing more. There are no requirements for the position so anyone can be a bereavement services facilitator for a hospice just as any staffer may substitute in that position at any time. Not only does hospice need to be clear to the public on this distinction but also that this "bereavement services provision" is a requirement, not an option, of the hospice choosing to bill Medicare (per CMS' Conditions of Participation) for their core services to the patient. As hospices do not get reimbursed for bereavement services it is unlikely that they will get any better than they are today as there is no incentive, monetary or otherwise. One might think that the risk of dissatisfied family members would be incentive to improve but if hospice staffers can simply "kick the widow" or worse...place blame directly on the family...most people will simply withdraw inwardly and not speak out about their negative experiences. I've encountered many. The most insidious example of this is when hospice staffers tell the family (post-death) "if only we'd been involved sooner, there's so much more we could have done." This places blame squarely on the family and not the hospice staff for the outcome. How many people, especially the elderly survivors, do you suppose would be willing to come forward and speak out for reform after being told that? It's one thing to be careless and hurtful with words while not realizing their impact. It's another altogether, by either an individual or a business, to do if for a purpose.
        Reply
        • D Someya Reed
          Sorry...that last part should be: ...to do IT for a purpose.
          Reply
        • Penny
          Oh, goodness. Yes, they really should make that clear. I remember how vulnerable one is at the point where a loved one is dying and after the death occurs; what a pity anybody should be subjected to this additional burden of blame on top of grief. That would easily be an additional emotional wound difficult to heal. I appreciate having that information.
          Reply
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  • Mary
    If their last time together was spent seeing the beautiful sights of Greece instead of the cafe au lait paint of a hospital or other facility, then the widow did the right thing! My take on the whole end of life is this - my husband is the only member of my family that I chose and for 30 years. So, he has lived with me longer than any of my siblings and thus, has had to see what treatments have done to me up close and personal. He's held the night vigils waiting to see if I would survive. Yeah, he gets to have the say in how this all ends.
    Reply
  • Bobbi
    A powerfully and painfully written post by someone who has gone through an intensely wrenching loss and going through an extremely tender time. As a hospice administrator, your experience deeply saddens me. I am so sorry that the care provided didn't validate the void you felt, and possibly still feel especially at this time of year. The hours of daylight are short, the dark, cold nights are harder to endure when faced with the realities of missing the loved one who has recently passed. Sometimes, simply by being a compassionate presence, we give permission for those emotions, sometimes too deep to express publicly, to the grieving loved one. The spontaneous tear shed by the nurse, social worker or aide is an empathetic response to the pain and loss - it is a human and heartfelt connection to the grieving person and connects that family member, friend, caregiver to a larger, feeling world - a caring community.
    Reply
    • D Someya Reed
      As you’ve identified yourself as a hospice administrator, implying a certain degree of professional context and insight to your comments, I am responding to those comments as I would to any hospice professional. Please infer no offense to you personally or any questioning of the sincerity of your concerns. That said, I am puzzled by your wording which seemed somewhat cryptic (to me) in its meaning. Please help me understand by elaborating on the following: How does care provided (to the dying?) "validate the void felt" (by the bereaved?)? Isn't validation in this context merely nothing more than acknowledgement? When correctly done, how would this be helpful? Isn’t the "compassionate presence" a technique used to create an awkward silence in order to allow a dying person to open up when that person might feel unable to talk about such emotions with other family members? I seem to recall Elisabeth Kubler-Ross and others alluding to something similar in her/their writings. Isn't the comment of the "spontaneous tear shed" (and I apologize but I was very upset by this and could think of no other analogy than) not unlike telling a starving person that the Christmas turkey was tender, juicy and delicious when told to someone who's had a bad, uncaring, irreversible and ultimately irresolvable (for the deceased) hospice experience? I can assure you that no tears were shed by any hospice staffer on my wife’s account. The assigned home health aide tried to help but lacked the authority to do so and that “tear” would have cost her job. I am not talking about an “evil” for-profit hospice cutting corners to boost profits as many non-profit hospices like to publicly claim (especially this one). Ours was a non-profit hospice and not only an early foundation hospice in our state but in the country. Of course, things change over time and the founders of this hospice are no longer around. I’m sure it was a much better, more caring service back then. But, I’m sure you’d agree that every hospice has problems. Every hospice has failures. What’s important is how those problems and failures are dealt with and are they dealt with openly or “under the rug.” As a hospice professional, I would like to offer you a simple challenge to improve hospice in many ways but mostly for the true focus of hospice…care of the dying. All hospices per CMS’ Conditions of Participation must have a Quality Improvement program. The primary feedback for this is the FEHC (Family Evaluation of Hospice Care) or Satisfaction Survey. CMS neither mandates the FEHC be given to all families nor mandates any reporting requirements from it; therefore, hospices can (wrongly, in my opinion) exclude families whom they feel would give a bad review or discard any bad reviews they receive. It is reprehensible for hospices that use the culled satisfaction survey results to state that they have, for instance, 100% satisfaction amongst patient families. If offered at all, the FEHC is usually sent about 6 months after the death of the patient with the claim that if sent earlier it would be upsetting to the family. I find this odd, for in our case, both my (dying) wife and I were told by the hospice social worker during the enrollment discussion that one would be sent (to me). Privately, my wife said to me that it was somewhat upsetting for her to think that I would be rating the service she received (while dying) without her. I believe that very few, if any, dying individuals would be upset by a service satisfaction survey having been dealt a terminal prognosis and having the strength to choose not to pursue curative measures. I also believe that hospices are asking the wrong people to rate their services. Cicely Saunders, Florence Wald and Elisabeth Kubler-Ross didn’t ask families for primary information…they dealt directly with the dying. Additionally, hospices of today too frequently comment that families are in denial, don’t have the medical knowledge to know what the hospice is doing, are too upset over the pending death to be rational, etc. It would seem to me that these would not be the best persons to rate your service. On the other hand, the dying individual is but is excluded from this process. I would like to challenge you (and your hospice) to ensure that all patients have access to the FEHC by making it a part of the enrollment package. Having the FEHC available from day 1 (along with plenty of comment area) would allow the dying patients to be more involved in their care if they choose to write or have others write what they feel is working or not working for them. If the patient chooses not to write/dictate then the opportunity is there, especially if properly explained by the hospice, for the caregivers to make notes on what is working and what is not or what is not being addressed. This may inspire both the dying patients and/or their caregivers/advocates to give the hospice more immediate feedback, real time and when something can actually be done to correct an issue. Again, if properly explained and promoted by the hospice, this would be felt by patients, caregivers and advocates alike as a more impersonal approach to feedback and less like “complaining.” As a bonus, for every hospice that actually does send these out, they would save money on postage. I don’t know of any hospice that emails an FEHC. That would be rather cold. Your thoughts, please? And thank you for clarifying my (above) confusion. As a footnote: No FEHC was ever sent to me though I waited anxiously for it to arrive (erroneously thinking that at this point in time it actually had value). It never did arrive because (unbeknownst to me) the Hospice Nursing Director placed a note in my wife’s medical file stating that I had called and told her that I didn’t want one. I never made that call. When I found out and asked for one, they refused to supply it.
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