Verbatim: Being good to the person in the mirror

At my recent CPSP meeting I presented this verbatim and got some new insights from the group. I’m going to shorten it a bit just to make it easier to read.

This happened quite some time ago and when my colleagues asked why I brought it up I responded that it deals with things that I still deal with today: self-care, tiredness, and burnout.

The patient in this visit, Mrs. S, is 67 years old and has been on hospice now for a few months. She has a history of alcoholism and is on hospice for chronic pain and malnutrition. She is extremely thin and emaciated even though she eats fairly well. She smokes regularly 3-4 times a day. She is a widow and has children but they are not involved with her and she does not want them contacted. Mrs. S is Roman Catholic but has not attended church in some time. She maintains her own prayer practices and she says that she finds these comforting. She almost always presents herself as happy and content unless she is in pain, and even then she tends to minimize her pain. Her pain is regularly 8 out of 10. She is very friendly but not always open regarding her own feelings, family and past. She tends to use humor to divert attention and make light of her situation. She is frequently in bed as this is most comfortable for her. Continue reading

Pastoral Care and Advanced Dementia

***update 5/7/20: I was recently forwarded an article noting how certain natural remedies, including tumeric, may have positive benefits for those suffering from Alzheimer’s disease and Parkinson’s disease. If you’re interested you can find it here. This is not an endorsement, just a passing along of information some may find beneficial.***

When I first started chaplaincy, I would walk out the door with bible in hand and a planned reading for the day for all my patients.

That lasted about two days.

The reason was not that I gave up or got lazy, but rather that I quickly found that the majority of the patients I saw didn’t benefit from it because they simply couldn’t understand what I was doing due to advanced dementia of some kind. Even if end-stage dementia was not their primary diagnosis, I’d say at least 2/3rds of the people I saw suffered from this. Many could communicate and talk with me, but lived in a world of their own. They would often misinterpret their environment, and in many cases couldn’t remember what I had just said to them a few minutes ago. Some were truly end stage, confined to a chair or to bed, nonverbal or nonsensical, and having no apparent understanding of what was going on around them. Organically, their brains were slowly dying, leaving them trapped in a world that I didn’t know how to enter.

That’s what makes dementia and Alzheimer’s Disease so tragic. A person can otherwise be relatively healthy, but as their brain deteriorates it can seem as if they are lost to us already. Continue reading

Mixed Messages

Every so often you’ll come across a case that’s difficult because of competing messages and needs. For example I have one patient that had declined spiritual support for several months. He was always on the forefront of people’s minds though, because of the many needs he had. He had alienated his entire family and been through most of the assisted living homes in the area, burning his bridges in the process. He suffered from a great deal of depression and anxiety, never seemed satisfied or comfortable (even after massive doses of pain medication), and seemed to be always wanting to change things in his care plan – though nothing made a difference. He had declined chaplain services for months (he was Catholic) but the team thought that he would greatly benefit from support, if only to give him someone else to vent to other than the on-call staff. Continue reading

Religious positions on end of life care: BBC News

I picked up the following from the BBC while doing a bit of research in medical ethics:

End of life care: What do religions say?

Picture of a hospice worker with a patient

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With figures showing that many people around the world die painfully due to scarce access to morphine, the World Health Organization is calling for improvements to end of life care.

But even when pain medication is available, the end of someone’s life is often an immensely difficult moment for all concerned. So for those who believe, what guidance can religions offer in a person’s last moments?

At first glance the words ‘good’ and ‘death’ might not seem compatible, yet most of us will have reflected on how we would like to depart this world, if given the opportunity to choose.

While the proverbial scenario ‘at home, asleep’ might unfortunately not be attainable for everyone, it does give a sense of what the ‘ideal’ death might look like: peaceful, pain-free and dignified.

Such themes occur in religious discourse around the end of life too. Although there can be variations in how branches of the same faith view specific situations, there is one common thread: that life is sacred and should be preserved.

Rabbi Yehuda Pink, convener of the West Midlands Jewish Medical Ethics Forum, says that traditional Judaism gives life infinite value, as humans are created in the image of God. Therefore, an hour, a day or a week of life has as much value as a year or ten years.

The challenge, says Rabbi Pink, comes when we need to determine whether we are preserving life or prolonging dying.

“There is no obligation to prolong the dying process, quite the opposite,” he says. “We need to ensure that people don’t suffer pain, so palliative care serves a very important role in Jewish beliefs.”

Similarly, Christianity, Islam and Buddhism see looking after the ill as a core value. Dr Desmond Biddulph, president of the UK’s Buddhist Society, says that Buddhism’s First Noble Truth recognises that death is suffering but not unexpected. Buddhism teaches to accept death while still recognising that life is precious, but no particular advice is given in terms of end of life care.

Relieving pain

While healing miracles appear in the Abrahamic faiths, palliative care is generally not seen as giving up on God’s powers. Rabbi Pink explains that Judaism views medicine as a partnership with God, who has hidden within nature the ability to do many things: “Unveiling and unleashing the potential of medicine is actually a declaration of faith in God,” he says.

Faiths agree on the fact that a patient with an incurable illness does not have to undergo extensive suffering. Reverend Kevin Dunn, chaplain at the Christie NHS Foundation Trust, describes situations in which someone might negotiate the amount of pain relief they are administered, as they want to remain conscious and less sedated.

However, he says that pain does not have an intrinsic religious value in traditional Christianity: “Pain can be used by the person in a spiritual way, but pain does not equal close to God.”

‘Angels and prophecies’

The meaning attributed to suffering can differ from patient to patient. Dr Jonathan Koffman, lecturer in palliative care at King’s College London’s Cicely Saunders Institute, has researched the role of religion and spirituality at the end of life.

His observations of London’s Afro-Carribean communities show how religions have developed a very strong framework for “making sense of the inexplicable”.

Dr Koffman stresses the importance for doctors to communicate with their patients and to understand that a person’s beliefs, levels of religiosity and ways to respond to illness can change. For example, some patients may have prophetic visions – such as an angel – which, despite evidence to the contrary, convince them their conditions will improve. These visions, which are deeply rooted in the patient’s belief system, can affect their end of life medical decisions.

Moreover, some patients may interpret pain in a religious key: “Some may ascribe pain to being a test of their religious faith, or divine punishment,” he says. “And in some instances they may refuse [pain relief], because they have to bear that suffering.”

A similar view can be found among some Muslim faithful. Imam Yunus Dudhwala, head of chaplaincy at Barts Health NHS Trust, says this belief comes from a saying of the Prophet Mohammed which hints at difficulty and pain as a way to expiate sins. Hence, some patients may be reluctant to take pain relief.

Intentions and results

Another reason some might refuse strong pain medication, explains Imam Dudhwala, is that in some cases it may hasten death. This is one of the many ethical issues surrounding end of life: that medicines used for a positive purpose, relieving pain, might have a negative effect: the death of the patient. The doctrine of double effect is often cited in these cases to support one argument over another.

Rabbi Pink says in these cases effects and their likelihood should be looked at carefully: “If the administration of the pain relief would have such severe effect, like to almost certainly kill the person, that would clearly be forbidden. For example, euthanasia is certainly not allowed in Jewish terms.”

Intentions have a very important role in the Buddhist approach too. Dr Biddulph explains that karma is created through selfish actions. Discussing hypothetical scenarios of individuals having to take medical decisions for a patient, he says not taking into account the best interest of everyone involved in the situation might affect karma.

Humane decisions

Withdrawing hydration and nutrition from a patient can be controversial. In general, religions agree that they do not constitute treatment, but basic human requirements. Rev Dunn says that in some particular cases they have been reduced or withdrawn because, as the body begins to close down, it stops processing food and fluids, and forced hydration and nutrition can be very painful.

So the focus is on a humane death and, perhaps, the opportunity to say the last goodbyes. While some families are reluctant to tell a loved one that they are dying, according to Imam Dudhwala, the patient has a right to know, because “it’s their right to prepare for what is coming, whether it’s writing a will, or preparing to meet their Creator.”

Rather than prescriptive advice on medical treatment, faiths aim to offer a framework to approach and make sense of death. Rev Dunn suggests: “making a will, making sure your affairs are in order, making sure your relationships are reconciled, thinking about organ donation.” To make sure that, in the darkest of days, some solace can be taken in knowing that nothing was left undone.

Choosing a career in Chaplaincy: 8 steps to take

On one hand, planning for a career as a Chaplain is easy – get board certified and get a job. Well it is that easy, sort of (if you consider about two extra years of career training easy), but getting to the place of “I want to be a Chaplain” is much harder.

Personally, I did not plan on becoming a Chaplain. I had a background in undergraduate and graduate level psychology from a religious college, had interned and worked in heath care settings after that, and while in seminary developed a passion for pastoral care. However Chaplaincy was never in the picture. Now I see that my path led me right to this career. Continue reading

Sample CPE Verbatim: Allowing for authenticity

The following is an excerpt from a Level II verbatim I did several years ago to give you an example of how I wrote toward the Level II standards.

This case ended up being one of my most difficult, in that the patient was a child and I was good friends with his mother. His death was hard on all of us. As I have children this child’s age, it cut very close for me. Perhaps a bit too close. This visit is a follow-up regarding her son’s death. I think you’ll see several themes at work:

  1. who is caring for whom?
  2. recognizing defensiveness
  3. allowing space for authenticity and giving permission to be authentic
  4. theodicy – how does God work things out for the good when a child dies?
  5. self care

While I see these themes at work, I don’t think I touched on all of them in the conversation.

Feel free to comment!

Continue reading

Self care is part of your work

As important as self care is for Chaplains and other caregivers, it’s probably one of the most neglected parts of our job. And self care is part of our job, because if we don’t care for ourselves we will be unable to do our job.

Continue reading

Jesus loves you, but you’re still going to die

Every so often in hospice you get asked a baffling question, one that you don’t have a ready answer for. Sometimes it’s because the answer is simply beyond fathoming or beyond a simple explanation: “why is this happening to me?” or “why does God allow so much evil in the world?” Other times I’m baffled because the answer seems so obvious that I’m trying to understand why it’s asked at all. Such was the question I had posed to me a while back:

“Why does God have to take my mom? She never did anything wrong!”

Continue reading

We need to rethink grief

Artist Motol Yamamoto, who created labyrinths of salt to help express his own grief at the loss of his sister due to brain cancer. Click on the image for more information.

In my hospice, as well as in many others, when someone dies we consider the family members involved and rate their grief as low, medium or high. The thought being that if someone is on the low end, they will generally be fine. On the medium and high end though, we need to be more involved as this person may not cope well.

And I’m starting to think this is really missing the point.

There has been research recently in regards to complicated grief – grief that becomes debilitating to the point of becoming a chronic, life-limiting condition. This is the kind of grief that we in hospice are trying to identify, monitor and assist with. It differs from normal grief in that it is much more of a clinical condition, however it has many of the same characteristics as normal grief. The main determinants between the two, putting it simply, are duration of symptoms and the severity of them. Normal grief can involve impulsive crying, sleeplessness, rapid weight loss or gain, and even auditory or visual hallucinations. But they tend to subside over time and generally do not interfere with daily functioning. Complicated grief resembles PTSD, in that it can have these same symptoms but amplified and intrusive to the point where they cannot function normally. Continue reading

Chaplain certification and other nightmares

Before I completed my last unit of CPE several years ago I was encouraged to go for my certification through the APC. It’s the “gold standard”, the “union card”, the key to get you in the door of any Chaplain job in the country.

Only I didn’t go for it.

I have plenty of excuses now looking back. I already had a job that didn’t require certification and they didn’t really care if I was. I was the Director of Spiritual Services already and none of the chaplains I supervised had their certification either, so I didn’t feel that pressure. As Director, I was also really really busy and didn’t feel like investing any more time then toward putting all the papers together and so on. I also felt really secure in my position and didn’t feel like certification would really help me where I was. Plus, I also got the feeling that although my job had supported me through part of my CPE, they were done with giving me time and financial support to pursue certification.

Then I got let go. Continue reading