On this episode of the Seekers of Meaning Podcast, Rabbi Address chats with Judith Sands, RN, author of Home Hospice Navigation: The Caregiver’s Guide.
For those dealing with chronic illness, Home Hospice Navigation: The Caregiver’s Guide is a valuable resource. The book is filled with tips that can help address advanced care planning and caregiving approach before a crisis or major change in condition occurs. Knowing your loved one’s wishes and being able to honor them will help guide your caregiving journey.
About the Guest
Judith Sands, RN, MSL, BSN, CPHRM, CPHQ, CCM, LHRM, ARM has over 30 years of experience as a healthcare professional and is a recognized authority in the areas of quality, risk management, and patient safety. She earned a Bachelor of Science in Nursing from the University of Florida and her Master of Science in Leadership from Nova Southeastern University. Judith is a registered nurse, holding state and national certifications in case, quality, and risk management. Judith has been a speaker at various local and national conferences. Her current focus is on ensuring patient safety, care coordination, and bringing dignity to end of life care.
Here is a translation of Judith’s credentials:
RN – Registered Nurse (North Carolina Multistate)
MSL – Master of Science, Leadership
BSN – Bachelor of Science, Nursing
CPHRM – Certified Professional, Healthcare Risk Management
CPHQ – Certified Professional, Healthcare Quality
CCM – Certified Care Manager
LHRM – Licensed Healthcare Risk Manager
ARM – Associate Risk Manager
Seekers of Meaning Podcast 1/4/2019
Guest: Judith Sands, author of Home Hospice Navigation: A Caregiver’s Guide.
Rabbi Address: [00:00:09] Shalom and welcome again to today's edition of "Seekers of Meaning, the podcast of Jewish Sacred Aging. I'm your host Rabbi Richard Address. In these podcasts we hope to explore some of the issues that touch on our families our communities and ourselves as a result of the ongoing revolution in longevity and you can contact us via our home page, JewishSacredAging.com, or our Facebook page, Jewish Sacred Aging, on Facebook. And we welcome your comments either to me on the voicemail icon on the website or directly to RabbiAddress @JewishSacredAging.com. And we welcome now to our Seekers of Meaning podcast microphone Judith Sands, clinical consultant, health care professional, and the creator of Home Hospice Navigation: A Caregivers Guide. Judith, welcome, welcome to Seekers of Meaning. How are you doing today?
Judith Sands: [00:01:02] Thank you for the invitation. I'm doing great.
Rabbi Address: [00:01:05] So this obviously what you've created this Home Hospice Navigation caregiver's guide speaks to an increasingly growing need amongst our generation, with the new life stage, extended life stage of caregiver. I guess the easiest thing, first question is, what motivated you to do this?
Judith Sands: [00:01:29] I was the homecare Navigator for my mother's hospice journey. It turned out to be an 11 and a half month journey, and through that process, despite all of my health care experience and expertise, we encountered challenges. And each time I would fight on my mom's behalf for a care plan that was to meet her needs or to address frustrations in obtaining items that she was entitled to under the Medicare benefit package under hospice, she kept saying, "Why are you fighting? Why are you fighting?" And in explaining to her that these were things that she was entitled to, or things that were in her best interest, she would respond by saying, "What do families do who don't have someone with your knowledge and experience to navigate the process?" She was very involved in the early writings of the book, to make it easier for caregivers to understand how to manage the home hospice caregiving process.
Rabbi Address: [00:02:57] So the home hospice navigation caregivers guide is sort of like a walk through of resources, how to navigate this maze of questions to ask, questions not to ask, issues related to hospice care, and the whole navigation system, because the majority of families who have to walk this walk do not have somebody who has an experience and expertise such as yourself, and they go into the system, as many clergy know, having to work with these families, and in many ways are just overwhelmed. So I guess the next easiest question is, where does one get a hold of the home hospice navigation caregivers guide? Is it online? Is it at Amazon? Is it at Barnes and Noble?
Judith Sands: [00:03:46] It is available on Amazon and there is a link from my web page, JudithSands.com. And my Web site also contains a host of resources that are available for the public.
Rabbi Address: [00:04:12] The patient advocate program which seems to be slowly emerging. We've had one or two patient advocates on past podcasts. This is a real necessity now isn't it?
Judith Sands: [00:04:26] It's becoming a necessity. Patient advocates, care managers, are slightly different. Case managers come with a nursing or social work background, where the patient navigator may not, and depending on the needs of the family, one may be more appropriate than the other.
Rabbi Address: [00:04:50] You mentioned before the development in conversation with your mom of a care plan. How important is it for a family to really sit down and develop a family centred care plan, as opposed to the end of life plan, the advanced directive health care proxy, POLST (Physician Order for Life-Sustaining Treatment) forms etc etc. But a care plan that may take you through years of experience. How important is that and how does a family begin to do that?
Judith Sands: [00:05:23] The family centred care plan augments that whole advanced directive piece ,and it really involves first, knowing the wishes of the loved one. What type of care do they want, where they want to receive that care, and who do they want involved? Hopefully those individuals are all in communication and can sit together before a crisis situation surfaces, and put together that plan, acknowledging where the resources to finance it are going to come from. Does the loved one have long term care insurance, which may provide for some of the care needed. Old policies written in the 1980s and 90s were written for somewhere between, well, maybe a hundred to one hundred and fifty dollars a day worth of care. Well, in today's reality, that may only meet three to five hours worth of care. If someone needed 24 hour care giving, the family needs to come to terms with how are they going to finance it, and can they finance it at home?
Rabbi Address: [00:06:56] The economics of aging Judith, seems to be, I mean, I run across this a lot when I when I go out and do sessions and workshops and congregations and organisations around Jewish Sacred Aging work. But this real concern is that most families are, like, one real medical crisis away from financial, sometimes hardship. How, in your working with families, how do you begin to counsel them to look down the road, I mean it's a tremendous amount of denial, you know, I would imagine in this, what practical advice can you give somebody?
Judith Sands: [00:07:33] You are right. There is a tremendous amount of denial, and bringing reality with cost of care in that community is often very scary, because it means for some, that the wishes of the loved one aren't going to be honored, and it means that, in some cases, someone is going to have to give up a job to provide caregiving or institutionalization, which is not often what is the desired care delivery mode, may become a reality. Hopefully, the hospice discussion has come into play, and hospice does provide some additional resources, but typically it's not going to provide the 24/7 hour care that someone may need.
Rabbi Address: [00:08:45] The aspect of care, in your work as a clinical consultant and health care professional, and having written this this guide, home hospice navigation caregivers guide, I think you allude to a little bit in the guide, but could you just talk a little bit about the importance of the spiritual component of care in dealing with? I think the phrase you use in the in the book is the twilight of life. What's the value, the power and the importance of the spiritual component in this, in this caregiving conundrum?
Judith Sands: [00:09:22] I believe, and from my experience the spiritual component plays a big piece for the loved one, as well as the circle of care, who is often the family. Whatever their spiritual affiliation is, whether it's liberal, or reform, to very traditional and orthodox, the rabbi, the community, the caregiving, the chesed groups, can provide a significant amount of support. If there is division in the family as to spiritual alignment, that can cause a lot of distress, especially if the loved one may be more traditional in their beliefs and where they obtain comfort, and who they would like to receive spiritual support from, may alienate other parts of the family, and vice versa. And at times, the loved one may need to receive spiritual support from whom they feel comfortable receiving the spiritual support, as does the family or care members. And at times assistance may be needed from several branches of the clergy to keep Shalom Beit (peace in the home). And I think that's where the art of the navigation and communication between clergy to help families and loved ones find the right mixture of spiritual support.
Rabbi Address: [00:11:31] I think when you use the word art, I think it's very well because caregiving and the work we do here at Jewish Sacred Aging. We always use the word like the art of caregiving, it's not a science. And what you're talking about is not, you could read a million books, and it is an art, and it's very ,I'm sure you well, you'll tell me, it's very personal to people or caregivers, each in their own way. I don't think and very responsive to their own personal family history and the dynamics of a family, which is you're alluding to, can can raise all kinds of issues, especially when one enters hospice. You use a phrase in the book, the gift, the gift of hospice. What what did you mean by that?
Judith Sands: [00:12:26] The gift of hospice, from my experience, has been, that hospice provides not only access to spiritual care, the physical care, the emotional care, but also to supplies, and in some cases, some financial resources. For us, Mom ended up having significant amount of wounds, and the cost of supplies out of pocket was astronomical. Once she entered hospice, that was part of her admitting diagnosis, so wound care supplies became part of her benefit package. So, from a cost perspective, that was a phenomenal gift of assistance. My mom was not receptive to the social work aspect of hospice, yet other individuals find this to be supportive, and help them navigate conflicts within the family, help them come to terms with the plan of care.
Rabbi Address: [00:13:58] We're speaking with Judith Sands, healthcare professional and clinical consultant, the author of Home Hospice navigation caregivers guide, and again available through your website as well as Amazon and, again,the Web site, Judith is what?
Judith Sands: [00:14:12] JudithSands.com.
Rabbi Address: [00:14:16] You write in the guide, you have a section, very interesting section called hospice misconceptions, walk me through that?
Judith Sands: [00:14:23] Often there are misconceptions with hospice that it is euthanasia. That is probably one of the most common myths and that is probably the strongest one that I feel that we need to dispel. Comfort care is not euthanasia. Hospice is a level of care, and not a place to go to die. Hospice services can be provided in a number of different settings, and I bring attention to the home hospice level of care, which is one of the most often forgotten places where services are provided, and one of the places where the loved one most often wants to receive care. Hospice care is not expensive. It is a covered benefit under Medicare, Medicaid, and most insurance plans, and finances should not be a barrier to obtaining hospice care. Too often we hear that morphine speeds up the dying process, but really morphine is one of the medications that's available to control anxiety, respiratory distress, and really, morphine is a godsend. And people should not be concerned about being dependent on narcotics at end of life. This is a time when individuals should take advantage of the various therapies to ease their discomfort during this particular time.
Rabbi Address: [00:16:47] The enumeration of the misconceptions is a very important part of the guide. Equally important is you have a section here, of really, how do how do you choose the right hospice? Because people, you know, when faced with this, in the middle of perhaps what may be a crisis, or period of great emotional stress and strain, will sit down with you, I'm sure, and say, "Well, how do how do I know which is the right place to go to? I don't know I've never done this." So walk me through that section a little bit. How, what are the what is some of the tips of how to choose, how to make the right choice for the right hospice?
Judith Sands: [00:17:32] One of the first things that a family should do would be to speak to a hospice liaison, and individuals have the right to choose the hospice entity they would like to use, and that individual is typically skilled in helping the family and the loved one review what their advanced directive wishes were, and assess, is there familial support, or a sufficiently strong circle of care to provide care at home, at the individual's residence? Do they need to be in a skilled facility? How close is the individual to passing, that maybe they are hospice-home appropriate, but often individuals want to die or pass on in their residence. So it's the assessment if the residence a suitable location. Is it a safe environment for someone who is declining physically and mentally? And can the family support them? Are they willing able and available to provide the needed care safely?
Rabbi Address: [00:19:18] All of this is, you know, you work with them and other hospice people who are liaisons etc. work with families trying to unpack this this maze that sometimes is very serious material. It's it's heart wrenching for many families for most families who have to go through this. And yet in the middle of your guide, the home hospice navigation caregivers guide, you have a section on humor. So you know there there it is in the middle of the guide. The importance of you know humor. Why?
Judith Sands: [00:19:58] Humor is a wonderful stress releaser. And no matter how hard and challenging caregiving is there are nuggets of humor. And the one that kept us laughing related to a call I received while I was with my mother, from an individual who was a caregiver, pretty much at the end of her rope, stretched out, sharing the challenges of caregiving for her 95 year old husband, who was blind, obese, and really could not participate much in his own care. And she said a home care person was here today and they want to put him in hostage care, you know, hostage care. And it took all that I had not to burst out laughing and explaining to her that hospice care is what we had talked to her about for months, and that hospice care is something she should really consider, and that yes, her loved one was truly appropriate for hostage care. And as a representative of the family, you know, why don't you further explore that. It's really wonderful. And my mother who was alert and oriented, she was really found great humor in that, because no one is really a hostage, in hostage care in hospice care. If the family decides after time or the loved one decides that's really not what they want or did not meet their expectations or this particular provider is not addressing their needs, they still have a choice. There are in most communities other hospice providers, and no one should feel that they are a hostage. But we still chuckle today, a year and a half after mom passed, about hostage care.
Rabbi Address: [00:22:32] Yeah I mean there's a lot of people you know in situations every clergy person has run across this in moments of great seriousness, and somebody will try to lighten it. And some people say, well, how can you how can you be so light at a time like this, and the reality is that a lot of times humor does just allow the pressure to be released. It doesn't take away from the seriousness but it also allows a sense of, you know, we have to, it's very serious but that that belly laugh may or that chuckle may release some of that internal pressure and allow us to refocus. So the power of humor. I'm glad you wrote about that. In the guide you also talk about the very practical aspects of choosing and levels of hospice care, and there's actual chart of what you call the Circle of Care, choosing the appropriate caregiver, which is always a major issue for families who enter the system, usually on a crisis level, but also towards the end of the guide, and I'd like you to before we start running out of time, I'd like to talk a little bit about this very very interesting little section called saying goodbye. What what what's in that section what what what's about?
Judith Sands: [00:23:53] As one physically declines, that can be very distressing for the caregiver and family members, the biological aspects of the body shutting down. And when the individual starts to refuse food and nutrition, sleeping more, withdrawing from the environment, that is often the time when family members are really shaken. For some, it is their first encounter with death, because death has been sanitized. That has happened behind closed doors, and in hospice, the family is surrounding the loved one at the decline. So families need to have a better appreciation as to the biological factors that go in to one's decline and as the body gets cooler, they may see mottling, or the purpling of the skin. This is the time when they can say their goodbyes, and reaffirm to the loved one their love and appreciation, and the thanks for what that individual has done for them, the meaning of the relationship, and at times that isn't pretty, but yet with the medications and assistance of hospice, that transition time can be made more comfortable.
Rabbi Address: [00:26:04] So we've been talking with Judith Sands, healthcare professional and clinical consultant, the author of Home Hospice navigation caregivers guide, and again Judith, if someone wants to get a hold of this very, very practical and important guide they can do so how?
Judith Sands: [00:26:20] At JudithSands.com.
Rabbi Address: [00:26:20] And where else?
Judith Sands: [00:26:26] Amazon.
Rabbi Address: [00:26:27] The great god Amazon, who knows all, sees all and is available on everything. It's eventually they'll take us over, and that may not be such a bad idea actually. Anyway, Judith, thank you very much for your time. And again home hospice navigation caregivers guide, Judith Sands ,thank you very much for your time and the work that you put in and your dedication. I'm sure you're making mom very very proud. So thank you for joining us here on today's edition of secrets of meaning continued good luck with you and all your work. Thank you.
Judith Sands: [00:27:03] Thank you.
Rabbi Address: [00:27:04] And to all of you thank you again for joining us on today's edition of Seekers of Meaning, the podcast of Jewish Sacred Aging. You can contact us at our home page, JewishSacredAging.com. Or to me RabbiAddress@JewishSacredAging.com. We invite you, as well, again, to visit the Facebook page, Jewish Sacred Aging on Facebook. And a special thank you to our producer. Seekers of Meaning is produced by Steve Lubetkin and recorded at the studios of Lubetkin Global Media here in charming and lovely cosmopolitan Cherry Hill New Jersey. Thanks all of you again for joining us. We look forward to greeting you on the next Seekers of Meaning, the podcasts of Jewish Sacred Aging. I'm your host Rabbi Richard address. Thank you. And Shalom.