On Death and Dying Well

This is going to be a tough post. I’m going to talk about death and dying. I’m going to tell you some stories of clients and friends who have died recently and what it was like.

In the course of my work, I spend most of my time counseling older folks and their adult children about their options. How to manage their stuff when their health fails. Who will make and what healthcare decisions need to be made.  How will they distribute what’s left of their stuff when they die?

Those discussions often begin when a elderly parent has a medical emergency or takes a precipitous decline. Sometimes the parent or adult child has had the foresight to engage me or another professional before a serious health issue occurs.

One such client, I’ll  call her Lucy, died last week.

Lucy called me up last year and engaged my service a year or so ago. At that time she seemed pretty healthy although she was growing older and frailer. Lucy was an artist. As is sometimes the case, I connected with Lucy in ways I don’t always do with my clients. Some of them I grow quite close to.  I liked and admired Lucy –  I think we were  both immediately comfortable and at ease with each other sitting around her kitchen table in her comfortable old farmhouse surrounded by much of Lucy’s collected treasures.  Lucy has several adult children. She agonized over whom to name as Executor over her relatively modest estate, whom to name as Power of Attorney and whom to make her Healthcare Agent.  We settled all that and a week or so later she dutifully signed, had witnessed and notarized all her documents. That was that!

I ran into Lucy a couple of time over the last year. At an art show. At the SeniorCenter. She had divorced her first husband eons ago and never remarried. She did have a “companion” – he too was growing older and quite frail.  But she took him everywhere and they seemed quite content in their circle of family, friends and community.

A while back – maybe 6 weeks ago or more – a mutual friend of informed me that all was not well. Lucy was sick. They feared it might be cancer. They were doing tests and would know more soon.

In my line of work, this kind of news is pretty common. When you work with older people, they are forever dying on you. It comes with the territory.  So I was not surprised by this news though I was saddened and concerned for Lucy, her friend (who needed her to help with his daily needs) and all of her adult children, grandchildren and even great grandchildren.

I didn’t hear anymore until last week, when one of the sons, one called me to tell me that Lucy was in the hospital. In fact, she was in ICU. And that it “didn’t look good.”  He wanted my help to sort out Power of Attorney issues and might I be available. I told him I could come by the hospital right away and to look for me within the next ½ hour.

ICU Death
This is what dying in ICU might look like

By the time I reached the hospital ICU unit, the representative from Hospice was already there. Lucy and her sons were making plans to transfer her to Hospice House. She would be discharged there the next morning provided all arrangements could be made.

Lucy did not look good. Her breathing was very labored and she was panting a little even. She was on oxygen of course; though she was always a slight little thing, she seemed emaciated and sunken to me. Her skin color and tone was bad.  Her eyes were darting rapidly from side to side and she was clearly very anxious.

The most I could do was reach out and take her hand and say hello. I said, “well, I guess I don’t have to ask you how you are…?”  — that got a wry smile out of her.

The hospice person excused herself and looking at Lucy I could tell she was overwrought and tired. They had come in early that morning by ambulance into  the E.R. and it was now after 5 p.m. After asking her permission to speak to her sons (which she gave) I suggested perhaps she was tired and needed some rest to which she promptly agreed. I asked her if she minded if we went down the hall  –  just the boys and I – to talk for a few minutes. She nodded with relief. Her eyes were drooping already (I presume she was already getting large doses of pain medication).

When I tucked Lucy up in her bed, I noticed she had ink marks on her chest. The kind they use when they do radiation treatments.  She was cold so I pulled the blanket up further and touched her cheek by way of goodbye. I was pretty sure I would not see her again.

I walked with the boys to the “consult” room. They told me that they had been told just today that Lucy had stage 4 lung cancer.  Then they told her there was nothing more they could do.  I told her sons that now was not the time to worry about banks, or bills, or Powers of Attorney or any of that stuff. Now was the time to spend with their mother and each other. And then I left inviting them to let me know how things progressed and to call me if there was anyway I could be of assistance.

Lucy never made it to hospice. She never even made it out of the hospital. She was transferred off the ICU and died a few hours later in a “regular” hospital bed.

For six weeks (at least) Lucy had undergone tests and treatments of all kinds – she had struggled to breathe, had radiation, and all kinds of drugs and chemo for six weeks. Surely the medical community had already diagnosed her with stage 4 lung cancer. Worse, they had to know the treatments and poisons they were pumping into her were all for naught and indeed made what remained of her life more difficult than it had to be. Just organizing alternative care for her companion and getting to and from the dozens of appointments she must have had would have been a serious challenge.

This is not the first case I’ve seen like this. Nor the last.

Earlier this spring, I was called to see a man in UVa Medical Center. He was suffering from advanced  liver cancer. He had been treated, radiated, chemotherapied and was preparing to be discharged home into the care of hospice. He wanted my assistance to write his burial instructions and Will. He was on heavy doses of narcotics. He could not tell me what time of day it was or even if it was night or day (there was a window right behind me. He was in pain. He was bloated and discolored and he could not hold his hand steady enough to write. He died the next day at home before he could finalize any arrangements and before Hospice could even sign him on.

Last year I was called by the administrator of a local Assisted Living to write a Will for a gentleman who was already completely debilitated and near death – blinded from the effects of diabetes and macular degeneration, he was in great pain and suffering from several serious medical conditions. The next day he was transported to Martha Jefferson Hospital where he lapsed into a coma and died of uremia and kidney failure without ever regaining conciousness much less executing a Will.

Three years ago, a dear friend – not a client – at age 80 developed a very aggressive form of lung cancer. When I told my partner, who is an R.N. and hospice case manager, about my friend and told her was called a “Pankose” tumor, she shook her head knowingly said, “six weeks.”  My friend proceeded to deteriorate quickly. Yet the radiologists and oncologists continued to urge her to undergo radiation and if possible, chemo to check the tumor’s growth and “make her more comfortable”. The tumor was inoperable. It was so large and so entwined in the brachial nerves that there was no chance surgeons could safely get at it.  After a few weeks, my friend developed a blood clot in the arm on the same side the tumor was growing. Her arm swelled to the size of an overripe melon. She was in agonizing pain yet the doctors insisted she continue to get up, dressed, climb in the hot car (it was June), travel to Mosby Radiation clinic, undress, climb on the table and lie flat and still on her back for 30 minutes or more. Weeks before she had already developed difficulty lying down at all – even laying propped on a wedge pillow in her own bed caused her pain and made breathing (not to mention sleep) difficult. Lying on a cold metal table staring at a radiation tube for ½ an hour was sheer agony.

I went with her on several of these trips to various doctors and clinics (she had accompanied me months before to MY appointments at UVa’s Cancer Center and visited ME in the hospital following surgery).

About three weeks in, she had just about given up and was asking the doctors about alternatives. Not yet ready to say “hospice” the discussion turned to “palliative” care. That is, treatment to make the patient more comfortable, relieve pain and reduce symptoms. A week later, my friend had just about decided to give up “traditional” cancer treatment (which was having no positive effect in any event) when the radiologist said to her, “Oh I’ve seen patients with this kind of Pankose tumor live for 5 years!”  So my friend struggled back up on the table for her radiation treatment again.

A week later, we were in the hospital with her again. The clot was so painful and the swelling so bad that something else needed to be done. They were giving her difficult to manage injected blood thinners to try to help break-up the clot and prevent any new ones from forming. This treatment seemed to have no beneficial effect.

My friend was discharged home with the plan that radiation would continue along with blood thinners and a pile of other difficult to manage medications  –  the radiation was to help reduce the tumor and hopefully allow the clot to dissolve “over time.”

That week, freak windstorms – micro-bursts-  took out electricity through large swaths of Charlottesville. My friend’s house was one of those without power for over a week in the sweltering heat. She could not be easily moved. By now, she was also on an oxygen tank which thankfully had battery backup power. She was, by now, pretty much confined to bed and couldn’t stay awake long enough to read or watch television anyway so she didn’t care about lights or power. We used damp cloths to keep her cool and pushed water to keep her hydrated and she seemed to be fine with the heat – she was old school and wasn’t crazy about air conditioning she said. She wanted to be in her own home.  Soon, she would need so much pain medication – Oxycodone and Roxynol in combination – that it was difficult to get her bowels to move and she had become impacted, another very uncomfortable situation. She could barely get out of the bed to get on the bedside commode to urinate and then, because she was so unstead,  only with the assistance of two of us. Even with the narcotics she was in excruciating pain and robbed of all dignity. Her hands shook so badly she could not administer her own meds so if no one was there to help, she went without her doses of painkillers. Or spilled most of it on her nightgown and sheets.

Still, the doctors wanted her to continue radiation. Finally, my friend said enough. She agreed to a “Do Not Rescuscitate” order and had the medical team refer her to hospice.

I stayed with her the day the nurse came to admit her to Hospice; she took her medical history and vital signs and explained what could be expected in the days to come.

At the end of that afternoon my friend was exhausted. Physically and emotionally, completely spent. As she sat back she asked me to rub her back which I did. She finally lay down and said, “I can rest now, can’t I?”  I stroked her head and assured her she could.

Corrine died two days later. Almost exactly 6 weeks after my partner predicted she would.

One last story, I’ll cut it short:

A friend from law school developed cancer on his tongue. A young man, with a new wife and young child. He had a growing law practice when his life was cut short. I won’t go into all the details but he tried valiantly to fight it. He lost.  Toward the end, as in the stories above, the oncologists and other traditional medical staff threw every mighty poison and potion they could at the cancer they were fighting.  That’s what we do in America. We fight heroically.  He also went down in immense pain and suffering —half his tongue cut away at first then the remainder of his tongue removed. More surgeries, chemo, radiation. Finally, he died after the excruciating pain as his bones cracked from the metastasizing cancer that grew in them. This is traumatic for friends and family to watch someone they love die this way feeling there is nothing they can do to alleviate their suffering.

We do not allow our dogs and cats to suffer this long and to die this badly.

Am I advocating euthanasia? Not at all. My point is that we have allowed “traditional” medicine to make decisions that do not serve their patients well. In fact, in some cases we have allowed them to conduct torture under license from the Board of Medicine.

Many, maybe most, patients don’t know that they can ask their doctors about alternative treatment plans. Palliative or comfort care. Holistic or natural treatments. Or that they can refuse treatments altogether. Hospice care, which, by the way, doesn’t mean you are actively dying. Hospice can come in  six months in advance. And if you don’t die in six months? Your doctor certifies you for another six months.  Many patients actually IMPROVE on hospice care and a few are actually discharged.

Most patients, by the time they are diagnosed with a fatal illness, are not in any position to absorb most of the very technical jargon and obtuse information that is thrown at them by medical professionals. Many of us simply are in a daze. We nod and go along with the treatment plan they set forth without our really grasping and understanding what the choices are. If any are even discussed.

As a cancer patient myself, I can tell you that ones ability to absorb any kind of information past the word “cancer” is greatly diminished.  I’m sure that the same holds true for those receiving treatment for heart disease, kidney failure, Lou Gehrigs disease or any of the many other things that are ultimately become our “cause of death”. (N.B. I have been cancer free for 3.5 years)

Medical professionals are trained to “cure” – to cut, to prescribe medication or chemo, to radiate, do physical or other therapies – even when it is clear that such treatmenst are without benefit or that their value is outweighed by the suffering and pain they cause. Medical professionals – yes, doctors – as well as pharmacies, ancillary treatment facilities and hospitals – are also billing hundreds of thousands of dollars for every test, image, treatment, lab test, consult, prescription and every follow up visit that goes along with them.

There is much broken with the healthcare system in the United States. But one thing that I see that is consistently broken and badly managed is the way that we die. And those astronomical medical bills? They don’t die with the patient. They go to his or her estate.

Polls consistently show that most people wish to die naturally in their own homes. Yet the vast majority of people in this country end up dying in an Emergency Room. or ICU or CCU with a nurse or resident pounding on their chest and another shoving a respirator tube down their throat, along the way breaking some of their frail and delicate teeth and ribs.  Many of the older people that die this way arrive by ambulance from the nursing home or assisted living where they believed they could pass quietly but that facility does not wish to have another “statistic” on their watch.

This kind of violent, tortuous death is not what I want. Most of the people I counsel do not want that kind of death.

As a patient you have rights. Residents in Assisted Livings and Nursing Facilities have rights. How do you protect them? You can help protect your healthcare decisions and see that your care plan goes as you want it to go only by making sure others know what your wishes are;  that can only be done effectively in writing. Get an Advanced Medical Directive – and if appropriate – have your lawyer include appropriate language to consent to a Do Not Resuscitate order (DNR).  Have a serious, open discussion with the person you appoint as your Healthcare Agent (Medical Power of Attorney). Ask questions of your physician or other providers, get an advocate if you can’t advocate for yourself (and most frail elderly and sick people are not able to do that for themselves)

Talk to your loved ones now – do not wait until a medical emergency is upon you!  You can “die well” – comfortable, free of pain, and with dignity and you can do so in your home, in a nursing facility, in a hospice house or if you prefer, in a hospital.

Don’t wait until you get sick to do this. Do it NOW!

Share

You Have a Right to Make Health Provider Choices

It’s Christmas eve and I’ve just been catching up on some back reading, including our local weekly papers, The Hook and Cville Weekly.   In the latter publication, there was a reference to an article in the November 27 issue regarding hospice. I noted in the Letter to the Editor that only Hospice of the Piedmont was mentioned. The article, Long journey home: A family’s experience with hospice care, is quite lengthy. And it is perhaps one of the best articles I’ve ever read on Hospice care. *

There is no doubt that hospice does wonderful work. What concerned me about the article was that they limited themselves to people having experience with only a single hospice agency – Piedmont. They interviewed workers from Piedmont, doctors from Piedmont and families served by Piedmont. One begins to wonder if this were a paid advertisement or editorial content!

In fact there are several hospice agencies in this area that patients and their families might choose from. In addition to Piedmont, Legacy Hospice is a dedicated hospicae agency. In the Waynesboro/Staunton area, Augusta Medical offers hospice service.  Also, most home health agencies, Asera, Interim, Medi-home health and others all offer hospice care. Some nursing facilities have their own hospice care units.

My beef is not with Piedmont. Not at all. My problem is that the article perpetrates a a different problem. That is, that many patients and families do not realize that they have choices regarding care providers. More importantly, they have the RIGHT to be informed of the choices available.  So for example, if you are a patient at Augusta Medical Center, and you are preparing to be discharged home and need home health care, AMC is required to advise you that you have choices among several home health agencies – which may include AMC’s own home health care (or hospice) agency but AMC may not limit a patients’ choices by failing to inform them of the available providers.  Typically, hospitals simply provide a bewilderingly long printed  list of healthcare providers. Either overtly or covertly, discharge planners and social workers are instructed to direct patients to a particular agency – usually one affiliated with the same hospital or its corporate entity.

This is wrong.

Patients have the right to make choices in their care planning. There are costs to think of and social issues that may impact one’s choices. For example, lets say you live in Stuart’s Draft (“over the mountain”) and your father has been transported to UVa. Medical Center after a serious stroke. After the initial crisis is over, UVa begins to make plans to discharge your father to a rehab center since he has lost the ability to walk and his speech and ability to swallow are severely impaired from the stroke. The discharge planner tells you that the first available bed is at Trinity Mission in Charlottesville. Very likely, you are unfamiliar with Trinity Mission and don’t even know where it is. But you expect the discharge planner – who seems very nice and caring – to take care of things for you. No doubt they have the best of intentions.  However, Trinity Mission is a nursing home north of Charlottesville and not easily accessible to you, since you will have to drive 40 minutes each way or more to see your father.

There are plenty of nursing and rehab facilities in the Waynesboro/Staunton area that would be closer and far more accessible to you. Placement in one of those facilities means you could drive yourself and your mother to see dad on a daily basis and you could both help encourage him to do his therapy, eat, talk, visit, walk and just generally spend time with him to keep his spirits up.  However, if you don’t know that you have choices in your care providers, you will simply assume that the UVa discharge planner “knows best” and simply acquiesce.

Soon, your father is in a nursing home that you, your mother, friends and other family cannot easily get to; father is alone most of the time; gets dispirited, lonely and depressed; he begins to refuse food, only reluctantly participates in any activities including physical, occupational and speech therapy. After a time, father has deteriorated to the point where he is unlikely to ever come home since he requires 24/7 care.

The story doesn’t have to end that way. You have choices. You can insist that the discharge planner find a bed in a facility closer to home. You, your mother, church members, co-workers and others can visit your dad regularly. His spirits are buoyed by the interaction, encouragement and good wishes he receives. He works hard to go home and ultimately regains much of the ability he lost due to the stroke so that he can go home even if it means having some additional care in the home.

Again, you have choices. The hospitals and healthcare providers are required to tell you what they are. But you should also ask. Don’t rely on others to help you make informed choices.

————————————-

*In the interest of full disclosure, I have to disclose that my partner is a Nurse-Case-Manager for another hospice agency here in town (not Piedmont). She has no ownership or profit interest however, she is a salaried employee.

Share

Hospice Care – And Now a Widow

For the past three years, I’ve watched my father struggle with age and debilitating disease.

henry
Henry Rosenberg Gelbman
July 31 1934 – November 29, 2012

My mother, his primary caregiver, also declined over this period, the emotional and physical strain causing her to age and struggle more than she might have otherwise.

We were blessed to have the assistance of several paid caregivers who not only took care of my parents, they loved them, sang to them, prayed for them.

In early September, my father was diagnosed with stage 5 kidney disease – e.g. kidney failure.  Because he was not a good candidate for dialysis and certainly not for a transplant, my father decided that the quality of life he was enduring was not something he wished to prolong, we arranged for hospice to come in. With his diagnosis, he finally met the criterion: a terminal diagnosis (kidney failure) and the likelihood of dying within 6 months.

Many people don’t know that hospice – a different but additional layer of care – is completely covered by Medicare & Medicaid.  (not room & board, but all the care). That meant that Dad received additional visits from and RN, a social worker, CNAs to help bath, feed, massage, dress him, change his colostomy bag and more.  All care that my mother could be relieved of on a pretty regular basis.

Another thing people don’t seem to know about hospice is that even though the certification indicates that the patient is likely to die within 6 months, they may have longer. At the end of six months, the hospice agency can simply recertify them for another 6 months.  Art Buchwald, the bestselling author and columnist was on hospice for over 2 years and was ultimately DISCHARGED from hospice because he got better.

Like Art Buchwald, my father also got better when admitted to hospice. There were no more arduous trips to doctor’s offices. They took him off many medications (many of which had deleterious side effects) and the increased hands-on personal care was terrific for his mental and physical health. Hospice paid for a hospital bed in the home. And to avoid pressure ulcers, it also paid for a special inflating mattress to alternate the pressure spots. It paid for pain medication & administration; it paid for medication to manage symptoms (like nausea, itching and others).

My father passed away after a sudden sharp decline on November 29th.  Hospice was there to pronounce him and their social workers and CNA’s were there to help us with the emotional and practical issues.

My mother is now a widow. And she has many practical and emotional hurdles to overcome.

Now, the hospice bereavement counselors are staying in touch with my mother who finds herself, after 56 years, suddenly alone. After all those years, she finds herself with no one to take care of; and not sure how to take care of herself. A host of financial, practical and life questions lay before her.

Like many adult children, and not just an elder attorney, I find myself in a position where the roles are reversed – the children are now parenting the parents.

I’m honored to take on that role (with my siblings). I’m grateful for the assistance of the professional caregivers – both private and professional – who have assisted us in these long months of transition.

Rest in Peace Dad, your wife will be well cared for.

Share